May 24, 2017

  • Wednesday May 24th

    Hello DestinyMaker's,

     

    PARTNERS

    #EPILEPSYFOUNDATION

    #ATHLETESVSEPILEPSY

    SPONSORS

    #DENNYSDINER

    #SOUTHATHLECTICS

    May 17th run 12.5 miles

    Current weight 158

    Weather for Aventura, Florida
    Today
    THUNDERSTORM
    90° 78°
    Thu
    SCATTERED_THUNDERSTORMS
    90° 75°
    Fri
    SCATTERED_THUNDERSTORMS
    87° 78°
    Sat
    MOSTLY_SUNNY
    89° 77°
    “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to SUDEP what I can do is go the extra mile.Here is the upcoming schedule of events planned….. Running Across America June 1st

    Previous events…..

    2017 Training began March 1st
    2016 This fall training begins, fell broke ribs
    2015 More surgery, recovery Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike

    When you are willing to die
    for something others are dying from,

    When you give up your home, work,
    wage, comfort for their suffering,

    When you place the lives of others before your own
    knowing full well the consequences of my actions

    When the ridicule outweighs the promise of possibility
    or even the success of your crusade

    You will then begin to understand just why
    I am willing to run across America.

    If nothing else I am as determined as I am stubborn to give up!

    The mind of a poet
    The heart of lion
    A soul from the sea

     

    It's time to stop dreaming and begin pursuing!

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    In dining room coffee, reading articles of interest and messages received from around the globe. It's always interesting nearing the beginning who responds and where the silence comes from. I can only control the effort of my dedication and my will to succeed. 2 weeks to go.

    Today I will be do my range of motion stretches and strengthening at 7, 9. These include body mechanic work, movement with and without weights. Shadow boxing movement. Leg and stomach work. All done clean without the use of any PEDS. Ever!!!!

    #destinymakersrunacrossamerica!

     

    Just over a week to go. It's an incredible feeling to see all the hard work come together. SO many behind the scenes working to get me to the starting line. It's truly an honor.

    Today I ran over 8 miles. I feel pretty good. Strong in the areas I need to be. 

    From May 2012....For me personally this accomplishment of running 100 miles finally eases a life long disappointment. After every run or game or workout I never fully thought I had given it my all. That there was always more to offer but I never was in the position. Even the bike rides I felt I could do more. Today I feel different. Today I know I gave it my all. Even when there was nothing left to offer I went to the one place where I could find that little extra. I thought of my son and crossed the finish line.
    https://scontent-atl3-1.xx.fbcdn.net/v/t1.0-9/18664322_1377087189026356_6237117966789486456_n.jpg?oh=6ba8d9f1221eec9b4725ae9dfae1f67f&oe=59A0181Csponsor!!!!!!!!

    Sponsoring me once again. Thank you Alberto!!!!!!!!!

    Clothing (Brand)
    Zensah's photo.
    Zensah

    Start and Finish today
    miles
    8.10
       
    hours
    1:56:54
       
    mins/mi
    14:24
       
    Elevation gain (ft)
    210
     
    No automatic alt text available.
     
    This is the new logo for the run.

    This is so awesome!!!!!!! Please check it out

    $ raised for #epilepsyfoundation $2,520 on line. $100 in checks

    EPILEPSY INFORMATION

    REN News

    Members of the Rare Epilepsy Network (REN) are building a patient registry to collect information about people living with rare epilepsies to better understand these conditions, improve treatments, and improve the lives and quality of care of people living with them. Learn about some of their recent and upcoming activities in the latest REN newsletter.
    Download the newsletter »
    Learn more and register for REN »

    Epilepsy Self-Management Survey


    Are you Black or African American? Are you 18 years old or older? Are you diagnosed with epilepsy? The Managing Epilepsy Well Network's survey to understand how adults with epilepsy manage their condition is still open.
    Learn more and get involved »

    Reminder

    Ezogabine Being Discontinued

    The medication ezogabine (Potiga), known as retigabine (Trobalt) in other countries, will not be commercially available after June 30, 2017.
    Find out what to do »

    The Epilepsies: Imagining Our Future


    Sonya Dumanis PhD, director of the Epilepsy Innovation Institute, discusses the current and future use of genetics in epilepsy prognosis and treatment.
    Learn more »

     
     

May 18, 2017

  • May 18th 2 weeks remain....

    Hello DestinyMaker's,

     

    PARTNERS

    #EPILEPSYFOUNDATION

    #ATHLETESVSEPILEPSY

    SPONSORS

    #DENNYSDINER

    #SOUTHATHLECTICS

    May 17th run 12.5 miles

    Current weight 158

    Weather for Aventura, Florida
    Today
    ISOLATED_THUNDERSTORMS
    85° 78°
    Fri
    PARTLY_CLOUDY
    86° 79°
    Sat
    MOSTLY_SUNNY
    86° 79°
    Sun
    SCATTERED_SHOWERS
    85° 77°

    “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.

    Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to SUDEP what I can do is go the extra mile.

    Here is the upcoming schedule of events planned….. Running Across America June 1st

    Previous events…..

    2017 Training began March 1st
    2016 This fall training begins, fell broke ribs
    2015 More surgery, recovery Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike

    When you are willing to die
    for something others are dying from,

    When you give up your home, work,
    wage, comfort for their suffering,

    When you place the lives of others before your own
    knowing full well the consequences of my actions

    When the ridicule outweighs the promise of possibility
    or even the success of your crusade

    You will then begin to understand just why
    I am willing to run across America.

    If nothing else I am as determined as I am stubborn to give up!

    The mind of a poet
    The heart of lion
    A soul from the sea
    Eyes from the sky....

    It's time to stop dreaming and begin pursuing!

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    In dining room coffee, reading articles of interest and messages received from around the globe. It's always interesting nearing the beginning who responds and where the silence comes from. I can only control the effort of my dedication and my will to succeed. 2 weeks to go.

    Today I will be do my range of motion stretches and strengthening at 7, 9. These include body mechanic work, movement with and without weights. Shadow boxing movement. Leg and stomach work. All done clean without the use of any PEDS. Ever!!!!

    #destinymakersrunacrossamerica!

     
    2 weeks from this moment I will be over at Turnberry Resort Hotel about to begin my run across America. It's really unbelievable. I look back to when all this began and I can assure you this I run without regret as this cause for me has grown larger then life. I feel good after yesterday's 12.5 mile run. It took me a little bit to get going. I was running 16 min miles but when I was done it was under 15. That's  where I want to be. I want to avg 4.5 mph. Run 8 hrs. After the first couple days as I get my sea legs well road legs. As I start earlier each day.After starting 6am it's my hope to get closer to  hint of first light. Then even beginning in the dark. A 4am start and run to noon. That would be so awesome. Once that happens there will be late afternoon runs as well.
     
    Work is basically over. I do have some hours remaining. Got to eat and pay bills. For those who have been following this blog for years you know the deal. I am always fighting the fight to keep it all together. I used to say want to keep the electric on I have always struggled. Need someone to run across America I am your guy. Now I have the chance to for this challenge.
     
    No automatic alt text available.
     
    This is the new logo for the run.

    Shirts being printed!!!

    Image may contain: text
     
    Other shirts being done.

    Volunteering for Jewish War Veterans and received a $100 donation to the #epilepsyfoundation for my run Across America.

    Image may contain: 2 people
     

    This is so awesome!!!!!!! Please check it out

    A person or thing that makes things or events happen to a particular person or thing in the future. The hidden power believed to control what will happen in the future.
    athletesvsepilepsy.com
     
    Image may contain: one or more people and outdoor
    that was then....

     
    Start and Finish
    miles
    12.50
       
    hours
    2:59:25
       
    mins/mi
    14:23
       
    Elevation gain (ft)
    42
     

    Training miles. I will post this everyday on the run

    $ raised for #epilepsyfoundation $2,520 on line. $100 in checks

    EPILEPSY INFORMATION

    REN News

    Members of the Rare Epilepsy Network (REN) are building a patient registry to collect information about people living with rare epilepsies to better understand these conditions, improve treatments, and improve the lives and quality of care of people living with them. Learn about some of their recent and upcoming activities in the latest REN newsletter.
    Download the newsletter »
    Learn more and register for REN »

    Epilepsy Self-Management Survey


    Are you Black or African American? Are you 18 years old or older? Are you diagnosed with epilepsy? The Managing Epilepsy Well Network's survey to understand how adults with epilepsy manage their condition is still open.
    Learn more and get involved »

    Reminder

    Ezogabine Being Discontinued

    The medication ezogabine (Potiga), known as retigabine (Trobalt) in other countries, will not be commercially available after June 30, 2017.
    Find out what to do »

     

    The Epilepsies: Imagining Our Future


    Sonya Dumanis PhD, director of the Epilepsy Innovation Institute, discusses the current and future use of genetics in epilepsy prognosis and treatment.
    Learn more »

     

October 6, 2016

  • September 20th through October 6th

    Hello DestinyMaker’s,
     
    Today’s effort…..
     
    Running 0 miles
    Cycling  0 miles
     
    January Totals
     
    Running 93 miles
    Cycling   372  miles
     
    February Totals
     
    Running  122
    Cycling 405
     
    March Totals
     
    Running  76
    Cycling 295
     
    April Totals
     
    Running 92
    Cycling 281
     
    May Totals
     
    Running 141
    Cycling  553
     
    June Totals
     
    Running 164
    Cycling 370

     
    July Totals
     
    Running  205
    Cycling  363
     
    August Totals
     
    Running 315
    Cycling 70
     
    September Totals
     
    Running 253
    Cycling 192
    October Totals
    Running 40
    Cycling  25
     
    Avg per Day
     
    Running  5.28 miles
    Cycling   11.16 miles
     
    Avg per Month 
     
    Running  151.37 miles
    Cycling    338.62 miles
     
    Year to date…
     
    Running 1494.63 miles
    Cycling  2930.31 miles
     
     “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.
     
    Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to Sudep what I can do is go the extra mile.
     
    Here is the upcoming schedule of events planned….. Running Across America Date TBD
     
    Previous events…..
    2017 Running Across America June 1st
    2016 This fall training begins
    2015 Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike
    Weather for North Miami Beach, Florida
    Today
    HEAVY_RAIN
    83° 77°
    Fri
    SCATTERED_SHOWERS
    88° 77°
    Sat
    MOSTLY_CLOUDY
    89° 75°
    Sun
    PARTLY_CLOUDY
    86° 74°

    If nothing else I am as determined as I am stubborn to give up!

     
    DestinyMaker Strength
    48 marathons in 48 days
    completed 100 mile run
     
    The mind of a poet
    The heart of lion
    A soul from the sea
    Eyes from the sky....

    It's time to stop dreaming and begin pursuing!

    Here is the official crowdfunding page to support my run across America! Any help small or large will be greatly appreciated.

    DestinyMaker's Run Across America for Epilepsy

    Support 'DestinyMaker's Run Across America for Epilepsy' by donating or sharing today!
    generosity.com
     

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    Welcome back my friends to the show that never ends......

    One key to success is not learning to put one foot in front of the other, it's relearning to use the other one first!

    2006 I packed my panniers (35pounds) in Seattle and biked home to Miami. I was told you will never make it. If I have to push while running I will.

    Summer of 2017

    No automatic alt text available.

    Others have gone solo, running/pushing is not something I want, even if willing. It does eliminate the
    need of relying on others.
    Couple of shorts, shirts, socks. Other obvious supplies. Smart re-hydration.

    Looking forward to staying hydrated during my training and event next summer when I will be running across America! ‪#‎drinkrehydrate‬

    Rehydrate is a rehydration drink with zero calories, zero sugar, zero caffeine, and zero fat! Above all it provides 3x electrolytes as your avg. sports drink!
    www.drinkrehydrate.com

    Check it out....

    Health/Medical/Pharmaceuticals · 6,074 Likes
    'All working together to make a difference!'
    Emfit MM, Movement Monitor
     
    There is much I am able to do but slowing down time is not one of them. There is more to the discipline within. It is here the truth is both fundamental and judgemental. Much has happened and a lot is going on. I though stay even keeled and know there is not much I am able to control. What I am able to focus on is the immediate moment I am in. What more do I have? What strength would it take to enable me to have enough for the moment I am in and any future one that might never occur.  
    I turned 56 on September 24th It also happened to be Maribel and I 2nd anniversary. No better birthday present then the love I receive. Yesterday happened to be our 3rd year anniversary of the day we met. As I stated earlier time is zooming along. I though am still battling the demons of complacency. Now I am doing all the things needed.  Its the next level I am searching to reclaim. I must find this. I must find it by January 1st. Eating, training, running, sacrificing, blogging and supplements. Not in any order but I know the difference. For 11 years from 2003-2014 No one trained harder, focused more. Love has softened me. I must now use that to fuel my finish.
    I am having in dining room coffee, reading articles of interest and messages received from around the globe. We are under a Hurricane warning here. Basically shit is about to hit the fan.
    Image may contain: outdoor and nature
    Sport fan wise it is my favorite time of the year as all 4 major sports are in action. I though am excited for the Philadelphia area teams. The 76ers, Flyers, Eagles all have young stars and the Phillies are slowly crawling back to respectability. Here the Miami Heat I root for.
    Much behind the scenes is in action for my run across America. Stay tuned!!!
     
    Poem
     
    There I sat
    being informed by a distant Zulu
    that words were a way of examining
    a moment in time.
     
    Understanding none of this
    was only the reality of my limited
    time here on Earth,
    I was young and my life benign.
     
    The spaces of creation are
    defined by mystery where these occurrences
    I learned can be scripted for further reflection
    where the examined life finds it’s truth.
     
    Only then did I understand that
    destiny and poetry
    lie beneath the core of time.
     
    Decades have passed. I can
    still hear the Zulu’s voice. Originally I wrote
    to control my destiny, now I write to find it’s path.
     
    Poem
     
    When you are willing to die
    for something others are dying from,
     
    When you give up your home, work,
    wage, comfort for their suffering,
     
    When you place the lives of others before your own
    knowing full well the consequences of my actions
     
    When the ridicule outweighs the promise of possibility
    or even the success of your crusade
     
    You will then begin to understand just why
    I am willing to run across America.
     
    Image result for 420

    (CNN)There is really just one salient question when it comes to today's decision by the Drug Enforcement Administration to expand the number of growers of research-grade marijuana, while still not changing the scheduling of marijuana: Will this decision make it significantly easier for scientists to study the medical benefits of marijuana?

     
    The answer sadly is: unlikely. And this is a missed opportunity that could further delay potential therapies to countless people.
    Up until today, the University of Mississippi has been the only federally approved source of research-grade medical marijuana in the United States. In a bit of seemingly positive news today, the DEA also announced it will now allow other places to apply for permission to do the same. The hope is that marijuana available for scientific study could grow in both amount and diversity.
     
    While this will be hailed as a victory for research, it will largely be symbolic, because no matter how much marijuana is available, if access is still difficult, it hardly matters.
    Imagine a product that is in high demand but kept behind a locked door. In response to the demand for the product, someone makes a baffling decision to make more of it but still never unlocks the door.
    Marijuana is that product, and its Schedule I designation is that locked door.
    That is the predicament of medical marijuana.
    Because marijuana is a Schedule I substance (meaning that by definition it has "no currently accepted medical use and a high potential for abuse"), there are significant hurdles to getting the door unlocked.
    Potential researchers typically go to the DEA first, as it grants the license to begin scientific research. Even if a license is granted, to study a Schedule I substance, institutions must have heavy-duty safes and high-grade security systems installed, which can be expensive. There is also the more subjective consideration of getting approval from your academic institution to do the research on a Schedule I status substance in the first place. Even if individual faculty members want to do that research, the university leadership may not want the hassle or the potential fallout of bad press. This happened at the University of Arizona when Dr. Sue Sisley was let go after trying to pursue a medical marijuana trial.
    Sisley eventually had to find private funding for her project, and just in April, seven years after the study was initially proposed, hers became the first DEA approved medical marijuana trial for post-traumatic stress in veterans.
    Then, after years of those bureaucratic hurdles, it is the National Institute on Drug Abuse that has held the final key to the lock. Today, it is the biggest federal public funder of marijuana research and has been the sole supplier of the marijuana itself. Even if more medical marijuana will now be freed up for research, the institute will still have to approve any studies it funds.
    The problem, however, is that last word in NIDA's name: "abuse."
     
    According to Dr. Donald Abrams at the University of San Francisco, whom I interviewed for my documentary "Weed," the institute has a primary mandate to study substances for potential abuse rather than as a medicine. Abrams makes an important point. Even if a study does cross all the hurdles described above, the door may stay locked if the intent is to study the benefits of medical marijuana as opposed to the harm.
    Consider this: A quick (and admittedly non-scientific) search through the U.S. National Library of Medicine pulled up 1,434 papers on medical marijuana over the past five years. That same search revealed only 57 papers on medical marijuana benefits. The vast majority were research into the harm of marijuana, such as "Bad trip due to anticholinergic effect of cannabis," "Cannabis induced pancreatitits" and "Marijuana use and risk of lung cancer." That imbalance paints a highly distorted picture of the harm-benefit ratio.

    Contradictory policy

    The road to medical marijuana research is paved with surprises and hypocrisy nearly everywhere you look.
    While the DEA continues to dig in on Schedule I status, deeming no medical benefit, the U.S. Department of Health and Human Services simultaneously holds a patent on cannabinoids for a wide range of medicinal purposes.
    The DEA continues to place marijuana alongside heroin and LSD as drugs with high abuse potential even though the DEA's own former chief administrative law judge, Francis Young, disagreed with this.
    This is one of many quotes from his 1988 petition (PDF) to unschedule marijuana.
    "In strict medical terms marijuana is far safer than many foods we commonly consume. For example, eating 10 raw potatoes can result in a toxic response. By comparison, it is physically impossible to eat enough marijuana to induce death. Marijuana in its natural form is one of the safest therapeutically active substances known to man. By any measure of rational analysis marijuana can be safely used within the supervised routine of medical care."
    Again, that was from a judge with the DEA itself. And yet nearly 30 years later, little has changed.
    Join the conversation

    See the latest news and share your comments with CNN Health on Facebook and Twitter.

    Whether we realize it or not, we all accept a certain amount of hypocrisy in our daily lives. Maybe we don't always have the energy to call it out or we are too speechless and dumbfounded that no one else seems to have noticed.
    With regard to the hypocrisy of federal medical marijuana policy, however, it is worth summoning the stamina to relentlessly present the facts. The lives of patients -- such as that of Charlotte Figi, whose seizures abated with the use of medical marijuana, and so many others -- depend on it.
    That a plant could provide so much benefit and still remain behind these locked doors is worth speaking up about.

    Highlights from the Hill

    September 2016

    In this Issue:

    • Epilepsy Foundation of Florida Shared Navigator Experience at HIV/AIDS Conference
    • House Committee Passes Legislation that Preserves EMS Agencies’ Ability to Administer Scheduled Medications in Emergency Situations
    • Urge Congress to Oppose Attempts to Erode Disability Rights Guaranteed by the ADA
    • Epilepsy Foundation Joins Amicus Brief related to Title II of the ADA
    • Patient Community Reacts to Proposal for Assessing Value of Medications
    • Creating a Pathway to FDA Approved CBD Therapies

    Epilepsy Foundation of Florida Shared Navigator Experience at HIV/AIDS Conference

     Monica Gonzalez, Ines Mosi, from the Epilepsy Foundation of Florida, and Natalie Keen, from The AIDS Institute, speak at the ACA Implementation Seminar at the US Conference on AIDS.

    On September 16, the Epilepsy Foundation of Florida shared their experience as a navigator for individuals and families seeking to purchase health insurance in the marketplace created by the Affordable Care Act (ACA). The affiliate has been a navigator since 2014 and has helped 10,000 people gain and maintain access to care. The presentation was part of a conference focused on implementation of the ACA.

    House Committee Passes Legislation that Preserves EMS Agencies’ Ability to Administer Scheduled Medications in Emergency Situations

    On September 20 the House Energy and Commerce Committee held a markup to consider a number of public health bills including the Protecting Patient Access to Emergency Medications Act of 2016 (H.R. 4365), bipartisan legislation that would amend the Controlled Substances Act to allow paramedics and emergency medical service professionals to continue to administer controlled substances to patients in emergency situations. We are pleased to see that the House Energy and Commerce Committee passed the bill unanimously by a voice vote. Click here to view our support letter.

    Urge Congress to Oppose Attempts to Erode Disability Rights Guaranteed by the ADA

    The House Judiciary Committee recently passed legislation, the ADA Education and Reform Act of 2015 (H.R. 3765), which would weaken protections for individuals living with a disability by making it easier for businesses to avoid complying with accessibility requirements under the Americans with Disabilities Act (ADA). The changes proposed in H.R. 3765 undermine the promise of the ADA by shifting the burden for ADA compliance from business owners to people living with disabilities. The bill would require a person living with a disability to provide written notice to a business that has not complied with ADA, kicking off a long timeline for compliance, despite the ADA being the law of the land for more than 26 years.

    The House is expected to vote on the ADA Education and Reform Act of 2015 this month. Congress needs to understand the critical role public accommodations requirements created by the ADA play in the lives of people living with disabilities. Urge your member of Congress to reject additional barriers for the disability community and vote against the ADA Education and Reform Act of 2015 to ensure we preserve the rights guaranteed by the ADA.  The ADA passed with strong bipartisan support and leadership and it is important to maintain these protections for all! Take Action!

    Epilepsy Foundation Joins Amicus Brief related to Title II of the ADA

    Recently the Epilepsy Foundation joined an amicus brief along with Paralyzed Veterans of America, National Federation of the Blind, and ten other disability rights organizations in the case of Ivy, et al. v. Morath.  The plaintiffs sued the Texas Education Agency (TEA), which oversees the administration of driver education courses in the state, alleging violations of the Title II of the ADA and Section 504 of the Rehabilitation Act.  Plaintiffs allege that TEA, which allows private entities to operate driver education courses, failed to ensure course accessibility to young adult deaf drivers.  TEA argues that it is not liable because the agency only provides licensure and regulation of the driving schools -- not driver education courses.  TEA further asserts that there was no agency or contractual relationship between TEA and the private entities.  The U.S. Court of Appeals for the Fifth Circuit (Texas, Louisiana, and Mississippi) agreed with TEA’s argument and ruled against the Plaintiffs. The Plaintiffs asked the Supreme Court to review the case.

    While the U.S. Department of Justice (DOJ), through its Solicitor General, opposed the Supreme Court taking the case, DOJ informed the Court that it believes that Texas is liable under Title II for the inaccessibility of the state’s private driver education schools.  Through the amicus brief, disability rights organizations make a legal argument about the circumstances under which state and local governments should be held accountable for discriminatory activities of private entities.  The brief was filed on August 30, 2016 and can be read here.

    Patient Community Reacts to Proposal for Assessing Value of Medications

    On September 12, the Epilepsy Foundation joined more than forty other groups in public comments submitted by the Partnership to Improve Patient Care (PIPC) to the Institute for Clinical and Economic Review (ICER) in response to their Value Assessment Framework. PIPC shared the patient community’s concerns that each person in need of care, especially people living with chronic conditions, has highly specific care needs and as a result a one-size-fits-all value model is not a sustainable framework for wellness. The letter included a number of suggestions for modifications that would yield a more patient focused framework. You can read PIPC’s full letter here.

    Creating a Pathway to FDA Approved CBD Therapies

    The Epilepsy Foundation is bringing together the epilepsy community to advocate for changes to state scheduling laws that would allow therapies derived from cannabidiol (CBD) and approved by the Food and Drug Administration (FDA) to become available to patients in a timely manner. Therapies derived from CBD show promise for people living with uncontrolled seizures and rare epilepsies. Despite FDA approval, states would need to implement changes to state scheduling laws for these therapies to become available in the state, even if the state has a medical cannabis program. Without changes to the state schedules, people would not be able to access and seek insurance coverage and reimbursement for FDA approved therapies derived from CBD. We’ve began reaching out to states agencies and legislatures to raise awareness of this issue so we can begin to implement changes to state law to ensure timely access to FDA approved therapies in the future.  Check out our website to read our FAQ and learn more about this issue.

September 19, 2016

  • September 15th thru September 19th

    Hello DestinyMaker’s,
     
    Today’s effort…..
     
    Running 0 miles
    Cycling  0 miles
     
    January Totals
     
    Running 93 miles
    Cycling   372  miles
     
    February Totals
     
    Running  122
    Cycling 405
     
    March Totals
     
    Running  76
    Cycling 295
     
    April Totals
     
    Running 92
    Cycling 281
     
    May Totals
     
    Running 141
    Cycling  553
     
    June Totals
     
    Running 164
    Cycling 370

     
    July Totals
     
    Running  205
    Cycling  363
     
    August Totals
     
    Running 315
    Cycling 70
     
    September Totals
     
    Running 153
    Cycling 142
     
    Avg per Day
     
    Running  5.05 miles
    Cycling   11.14 miles
     
    Avg per Month 
     
    Running  151.37 miles
    Cycling    338.62 miles
     
    Year to date…
     
    Running 1354.63 miles
    Cycling  2855.31 miles
     
     “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.
     
    Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to Sudep what I can do is go the extra mile.
     
    Here is the upcoming schedule of events planned….. Running Across America Date TBD
     
    Previous events…..
    2017 Running Across America June 1st
    2016 This fall training begins
    2015 Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike
    Weather for North Miami Beach, Florida
    Today
    SCATTERED_THUNDERSTORMS
    88° 78°
    Tue
    SCATTERED_THUNDERSTORMS
    87° 78°
    Wed
    ISOLATED_THUNDERSTORMS
    87° 79°
    Thu
    SCATTERED_THUNDERSTORMS
    86° 79°

    If nothing else I am as determined as I am stubborn to give up!

     
    DestinyMaker Strength
    48 marathons in 48 days
    completed 100 mile run
     
    The mind of a poet
    The heart of lion
    A soul from the sea
    Eyes from the sky....

    It's time to stop dreaming and begin pursuing!

    Here is the official crowdfunding page to support my run across America! Any help small or large will be greatly appreciated.

    DestinyMaker's Run Across America for Epilepsy

    Support 'DestinyMaker's Run Across America for Epilepsy' by donating or sharing today!
    generosity.com
     
    The goal is to raise $30,000.
     

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    Welcome back my friends to the show that never ends......

    One key to success is not learning to put one foot in front of the other, it's relearning to use the other one first!

    2006 I packed my panniers (35pounds) in Seattle and biked home to Miami. I was told you will never make it. If I have to push while running I will.

    Summer of 2017

    No automatic alt text available.

    Others have gone solo, running/pushing is not something I want, even if willing. It does eliminate the
    need of relying on others.
    Couple of shorts, shirts, socks. Other obvious supplies. Smart re-hydration.

    Image may contain: sky, tree and outdoor2 of my greatest passions combined to allow my avocation to arrive at my vocation!!!
    This week officially kicks off the new season for work. More clients are returning and starting. It could turn out to be a great season. If all come back and the actress stays with it. Soon I will spill the beans on who I am working with. She famous, multiple Emmy awards and nominations. Super lady!!!! Starting today and until spring there are no days off unless weather or other circumstances take over. It couldn't have come at a better time as summer has been slow and difficult. Seems like I am saved each summer. first the Russian child a few years ago. Then the boys the previous summer and now the actress. Today I am working at.....
    8, 830, 9:15, 11.

    Looking forward to staying hydrated during my training and event next summer when I will be running across America! ‪#‎drinkrehydrate‬

    Rehydrate is a rehydration drink with zero calories, zero sugar, zero caffeine, and zero fat! Above all it provides 3x electrolytes as your avg. sports drink!
    www.drinkrehydrate.com

    Check it out....

    Health/Medical/Pharmaceuticals · 6,074 Likes
    'All working together to make a difference!'
    Emfit MM, Movement Monitor
     
     
     Basic sponsorship is product for logo placement here in blog, twitter and facebook. I am also offering logo placement on a vehicle at $2000. Soon to announce logo placement partnerships.  $1000 on shirt being worn and $2500 for both.  If I could get 5-10 companies it would go a long way toward full funding for the project/event.
     
     
    Poem
     
    There I sat
    being informed by a distant Zulu
    that words were a way of examining
    a moment in time.
     
    Understanding none of this
    was only the reality of my limited
    time here on Earth,
    I was young and my life benign.
     
    The spaces of creation are
    defined by mystery where these occurrences
    I learned can be scripted for further reflection
    where the examined life finds it’s truth.
     
    Only then did I understand that
    destiny and poetry
    lie beneath the core of time.
     
    Decades have passed. I can
    still hear the Zulu’s voice. Originally I wrote
    to control my destiny, now I write to find it’s path.
     
    Poem
     
    When you are willing to die
    for something others are dying from,
     
    When you give up your home, work,
    wage, comfort for their suffering,
     
    When you place the lives of others before your own
    knowing full well the consequences of my actions
     
    When the ridicule outweighs the promise of possibility
    or even the success of your crusade
     
    You will then begin to understand just why
    I am willing to run across America.
     
    Image result for 420

    (CNN)There is really just one salient question when it comes to today's decision by the Drug Enforcement Administration to expand the number of growers of research-grade marijuana, while still not changing the scheduling of marijuana: Will this decision make it significantly easier for scientists to study the medical benefits of marijuana?

     
    The answer sadly is: unlikely. And this is a missed opportunity that could further delay potential therapies to countless people.
    Up until today, the University of Mississippi has been the only federally approved source of research-grade medical marijuana in the United States. In a bit of seemingly positive news today, the DEA also announced it will now allow other places to apply for permission to do the same. The hope is that marijuana available for scientific study could grow in both amount and diversity.
     
    While this will be hailed as a victory for research, it will largely be symbolic, because no matter how much marijuana is available, if access is still difficult, it hardly matters.
    Imagine a product that is in high demand but kept behind a locked door. In response to the demand for the product, someone makes a baffling decision to make more of it but still never unlocks the door.
    Marijuana is that product, and its Schedule I designation is that locked door.
    That is the predicament of medical marijuana.
    Because marijuana is a Schedule I substance (meaning that by definition it has "no currently accepted medical use and a high potential for abuse"), there are significant hurdles to getting the door unlocked.
    Potential researchers typically go to the DEA first, as it grants the license to begin scientific research. Even if a license is granted, to study a Schedule I substance, institutions must have heavy-duty safes and high-grade security systems installed, which can be expensive. There is also the more subjective consideration of getting approval from your academic institution to do the research on a Schedule I status substance in the first place. Even if individual faculty members want to do that research, the university leadership may not want the hassle or the potential fallout of bad press. This happened at the University of Arizona when Dr. Sue Sisley was let go after trying to pursue a medical marijuana trial.
    Sisley eventually had to find private funding for her project, and just in April, seven years after the study was initially proposed, hers became the first DEA approved medical marijuana trial for post-traumatic stress in veterans.
    Then, after years of those bureaucratic hurdles, it is the National Institute on Drug Abuse that has held the final key to the lock. Today, it is the biggest federal public funder of marijuana research and has been the sole supplier of the marijuana itself. Even if more medical marijuana will now be freed up for research, the institute will still have to approve any studies it funds.
    The problem, however, is that last word in NIDA's name: "abuse."
     
    According to Dr. Donald Abrams at the University of San Francisco, whom I interviewed for my documentary "Weed," the institute has a primary mandate to study substances for potential abuse rather than as a medicine. Abrams makes an important point. Even if a study does cross all the hurdles described above, the door may stay locked if the intent is to study the benefits of medical marijuana as opposed to the harm.
    Consider this: A quick (and admittedly non-scientific) search through the U.S. National Library of Medicine pulled up 1,434 papers on medical marijuana over the past five years. That same search revealed only 57 papers on medical marijuana benefits. The vast majority were research into the harm of marijuana, such as "Bad trip due to anticholinergic effect of cannabis," "Cannabis induced pancreatitits" and "Marijuana use and risk of lung cancer." That imbalance paints a highly distorted picture of the harm-benefit ratio.

    Contradictory policy

    The road to medical marijuana research is paved with surprises and hypocrisy nearly everywhere you look.
    While the DEA continues to dig in on Schedule I status, deeming no medical benefit, the U.S. Department of Health and Human Services simultaneously holds a patent on cannabinoids for a wide range of medicinal purposes.
    The DEA continues to place marijuana alongside heroin and LSD as drugs with high abuse potential even though the DEA's own former chief administrative law judge, Francis Young, disagreed with this.
    This is one of many quotes from his 1988 petition (PDF) to unschedule marijuana.
    "In strict medical terms marijuana is far safer than many foods we commonly consume. For example, eating 10 raw potatoes can result in a toxic response. By comparison, it is physically impossible to eat enough marijuana to induce death. Marijuana in its natural form is one of the safest therapeutically active substances known to man. By any measure of rational analysis marijuana can be safely used within the supervised routine of medical care."
    Again, that was from a judge with the DEA itself. And yet nearly 30 years later, little has changed.
    Join the conversation

    See the latest news and share your comments with CNN Health on Facebook and Twitter.

    Whether we realize it or not, we all accept a certain amount of hypocrisy in our daily lives. Maybe we don't always have the energy to call it out or we are too speechless and dumbfounded that no one else seems to have noticed.
    With regard to the hypocrisy of federal medical marijuana policy, however, it is worth summoning the stamina to relentlessly present the facts. The lives of patients -- such as that of Charlotte Figi, whose seizures abated with the use of medical marijuana, and so many others -- depend on it.
    That a plant could provide so much benefit and still remain behind these locked doors is worth speaking up about.

    Highlights from the Hill

    August 2016

    In this Issue

    • DEA Won’t Reschedule Cannabis to Improve Access for Research
    • Amtrak Settles Epilepsy Discrimination Case

    DEA Won’t Reschedule Cannabis to Improve Access for Research

    On Thursday, August 11, 2016 the Drug Enforcement Agency (DEA) announced it would not reschedule cannabis, but would expand the number of sites that can grow cannabis for research. We are disappointed with the announcement because removing cannabis from Schedule I in the Controlled Substances Act would paved the way for new treatments as well as much needed information that can help families make informed choices about medical cannabis.

    We are encouraged that the DEA is considering expanding the number of sites that can grow cannabis for research and will closely monitor the implementation of the proposed expansion. Expansion criteria should not be so burdensome and it does not lead to meaningful expansion of growing sites. Currently it is difficult for scientists and researchers to laboratory-based research studies to better understand how cannabinoid compounds might be working in the brain and to organize clinical trials involving cannabis because it is a Schedule I substance and only the National Institute for Drug Abuse (NIDA) can cultivate cannabis for medical research.

    While the DEA acknowledged some promise for CBD for epilepsy and seizures, they looked at a limited number of studies -- none in epilepsy or children, and none published since 2013. Recent studies and preliminary findings from clinical trials involving cannabis have shown minimal side effects or abuse potential for CBD when used to treat uncontrolled seizures.

    The Epilepsy Foundation will continue to advocate for removing federal barriers to cannabis research and policies that promote innovation for the nearly one million people living with uncontrolled seizures. You can our press release on the DEA announcement at www.epilepsy.com/cannabis.  


    Amtrak Settles Epilepsy Discrimination Case

    The National Railroad Passenger Association, better known as Amtrak, recently settled a disability discrimination lawsuit involving a job applicant with epilepsy. The lawsuit, filed by the Equal Employment Opportunity Commission (EEOC), involved Shawn Moe. 

    In April 2013, Moe applied for a job as a Machinist Journeyman at Amtrak’s mechanical yard in Seattle, Washington.  Amtrak provided a conditional offer of employment, but withdrew the offer after Moe reported a history of epilepsy during a post-offer medical examination.  Amtrak cited safety concerns as its justification for withdrawing the offer.  However, Amtrak failed to consider that Moe had been seizure free with medication for years and that Moe received clearance from his neurologist, who assessed that he could perform all the duties of the job, including work on machinery and heights.

    EEOC filed the lawsuit in August 2015 after attempts to reach a pre-litigation settlement failed. The lawsuit was recently settled through a consent decree, which awards Moe with $112,000 in compensatory damages and lost wages.  Amtrak also agreed to implement a modified ADA policy and train its staff on hiring and assessing for reasonable accommodations. This case is a major victory for job applicants and employees with epilepsy. 

    EEOC’s press release about the settlement can be viewed here.

    Earlier news

    Congressional Appropriations Bills Suggest Funding for CDC and NIH

    On July 14, the House Appropriations Committee approved the fiscal year 2017 Labor, Health and Human Services (LHHS) Appropriations bill, which would provide an increase in several critical research initiatives. We are encouraged that the committee included $33.3 billion for the National Institutes of Health (NIH), $1.25 billion above the fiscal year 2016 enacted level and $2.25 billion above the President’s discretionary budget request. Furthermore, the Brain Research through Application of Innovative Neurotechnologies (BRAIN) Initiative would be funded at $195 million, an increase of $45 million from the previous year.

    On June 7, the Senate Committee on Appropriations, Labor, Health and Human Services, Education, and Related Agencies Subcommittee passed their fiscal year 2017 Labor, HHS & Education Appropriations bill, which includes an increase in funding for epilepsy programs at the Centers for Disease Control and Prevention (CDC).

    The appropriations bills must be passed by the full House and Senate, respectively, before they can go to conference for Senators and Representatives to compromise on language. The Epilepsy Foundation strongly supports federal funding for epilepsy research and programs, and we will continue to monitor the appropriations process for fiscal year 2017.


    Epilepsy Foundation Urges Congress to Support CARERS Act

    On July 12, the Epilepsy Foundation joined several other patient organizations in a group letter led by Americans for Safe Access (ASA) to Senators Grassley (IA) and Leahy (VT) and Representatives Pitts (PA) and Green (TX), urging them to bring the Compassionate Access, Research Expansion, and Respect States (CARERS) Act for a committee vote in the Senate Judiciary Committee and the House Energy and Commerce, Health Subcommittee.

    The Epilepsy Foundation strongly supports federal cannabis legislation that would lift federal barriers to cannabis research and create safe, legal access to medical cannabis in the states, including the CARERS Act.

    You can view the letter and urge your members of Congress to support the CARERS Act at www.epilepsy.com/cannabis.

    On June 21, Beatriz Duque Long, senior director government relations at the Epilepsy Foundation, spoke at a briefing where she explained the Foundation’s support of the CARERS Act. Senators Cory Booker (NJ) and Kirsten Gillibrand (NY) also spoke on the importance of passing the CARERS Act and removing federal barriers to research while protecting individuals in states with medical cannabis programs.


    Senators and Patient Groups Oppose Changes to Six Protected Classes

    Senators Grassley (IA) and Brown (OH) wrote a letter to the Centers for Medicare and Medicaid Services (CMS) opposing the recent recommendations from the Medicare Payment Advisory Commission (MedPAC) which would weaken the six protected classes. Bloomberg News recently highlighted the letter and the dangers of weakening the six protected classes, and featured a quote from Angela Ostrom, our chief legal officer and vice president public policy, reiterating our strong opposition to MedPAC’s recommendations. You can read the article at http://bit.ly/BNACMS.

    Legislation Would Weaken Americans with Disabilities Act

    H.R. 3765, the ADA Education and Reform Act of 2015, recently passed out of the House Judiciary Committee and now makes its way to the full House. This legislation would eliminate the responsibility of businesses to know their obligations under the Americans with Disabilities Act (ADA) and place the burden of ensuring that businesses remain accessible on people with disabilities. The Epilepsy Foundation strongly opposes this legislation and will continue to monitor the bill as it moved forward.

September 14, 2016

  • September 4th thru September 14th

    Hello DestinyMaker’s,
     
    Today’s effort…..
     
    Running 9 miles
    Cycling 20 miles
     
    January Totals
     
    Running 93 miles
    Cycling   372  miles
     
    February Totals
     
    Running  122
    Cycling 405
     
    March Totals
     
    Running  76
    Cycling 295
     
    April Totals
     
    Running 92
    Cycling 281
     
    May Totals
     
    Running 141
    Cycling  553
     
    June Totals
     
    Running 164
    Cycling 370

     
    July Totals
     
    Running  205
    Cycling  363
     
    August Totals
     
    Running 315
    Cycling 70
     
    September Totals
     
    Running 123
    Cycling 82
     
    Avg per Day
     
    Running  5.04 miles
    Cycling   11.11 miles
     
    Avg per Month 
     
    Running  151.37 miles
    Cycling    338.62 miles
     
    Year to date…
     
    Running 1324.63 miles
    Cycling  2795.31 miles
     
     “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.
     
    Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to Sudep what I can do is go the extra mile.
     
    Here is the upcoming schedule of events planned….. Running Across America Date TBD
     
    Previous events…..
    2017 Running Across America June 1st
    2016 This fall training begins
    2015 Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike
    Weather for North Miami Beach, Florida
    Today
    MOSTLY_CLOUDY
    88° 79°
    Thu
    SCATTERED_THUNDERSTORMS
    89° 78°
    Fri
    ISOLATED_THUNDERSTORMS
    88° 79°
    Sat
    PARTLY_CLOUDY
    88° 78°

    If nothing else I am as determined as I am stubborn to give up!

     
    DestinyMaker Strength
    48 marathons in 48 days
    completed 100 mile run
     
    The mind of a poet
    The heart of lion
    A soul from the sea
    Eyes from the sky....

    It's time to stop dreaming and begin pursuing!

    Here is the official crowdfunding page to support my run across America! Any help small or large will be greatly appreciated.

    DestinyMaker's Run Across America for Epilepsy

    Support 'DestinyMaker's Run Across America for Epilepsy' by donating or sharing today!
    generosity.com
     
    The goal is to raise $30,000.
     

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    Welcome back my friends to the show that never ends......

    In dining room coffee, reading articles of interest, posts to social networking sites and yes messages received from around the world.  With no end in sight I continue to look for a beginning. A way to move forward and upward. If all I have is my ability then why sit idle.

    Image may contain: 1 personStaying ready....

    Another solid run yesterday. Keeping the pace I will use. No more then 5mph and no less then 4. Climbing to higher elevations certainly will slow things down. I will be prepared for 8 hour days. 32 miles a day until out from higher elevations and more once I make it across the mountains.

    Driving 20 hours was not good on my body and has me rethinking the days needed to drive out west before running back east!

     
    Image may contain: one or more people
    As I did, many of you still see the frozen stare. dilated pupils. Still hear the muffled sound of moaning. New found tools, meds ease the burden for some, Many still panic asking as I did for one more spoken word, one more breath. Those of you whose children will never speak I have tried to be your voice. With children unable to walk I have gone the extra mile. Some of you have lost those who have meant the most I have tried to give some comfort. I once asked "how do you keep getting up?" and when I heard "I never saw you stay down" The journey to be a destinymaker began. If I have inspired just one person, if I have given a parent hope or closure to a family I have done all I have set out to do. 

    Looking forward to staying hydrated during my training and event next summer when I will be running across America! ‪#‎drinkrehydrate‬

    Rehydrate is a rehydration drink with zero calories, zero sugar, zero caffeine, and zero fat! Above all it provides 3x electrolytes as your avg. sports drink!
    www.drinkrehydrate.com

    Check it out....

    Health/Medical/Pharmaceuticals · 6,074 Likes
    'All working together to make a difference!'
    Emfit MM, Movement Monitor
     
     
     Basic sponsorship is product for logo placement here in blog, twitter and facebook. I am also offering logo placement on a vehicle at $2000. Soon to announce logo placement partnerships.  $1000 on shirt being worn and $2500 for both.  If I could get 5-10 companies it would go a long way toward full funding for the project/event.
     
     
    Poem
     
    There I sat
    being informed by a distant Zulu
    that words were a way of examining
    a moment in time.
     
    Understanding none of this
    was only the reality of my limited
    time here on Earth,
    I was young and my life benign.
     
    The spaces of creation are
    defined by mystery where these occurrences
    I learned can be scripted for further reflection
    where the examined life finds it’s truth.
     
    Only then did I understand that
    destiny and poetry
    lie beneath the core of time.
     
    Decades have passed. I can
    still hear the Zulu’s voice. Originally I wrote
    to control my destiny, now I write to find it’s path.
     
    Poem
     
    When you are willing to die
    for something others are dying from,
     
    When you give up your home, work,
    wage, comfort for their suffering,
     
    When you place the lives of others before your own
    knowing full well the consequences of my actions
     
    When the ridicule outweighs the promise of possibility
    or even the success of your crusade
     
    You will then begin to understand just why
    I am willing to run across America.
     
    Image result for 420

    (CNN)There is really just one salient question when it comes to today's decision by the Drug Enforcement Administration to expand the number of growers of research-grade marijuana, while still not changing the scheduling of marijuana: Will this decision make it significantly easier for scientists to study the medical benefits of marijuana?

     
    The answer sadly is: unlikely. And this is a missed opportunity that could further delay potential therapies to countless people.
    Up until today, the University of Mississippi has been the only federally approved source of research-grade medical marijuana in the United States. In a bit of seemingly positive news today, the DEA also announced it will now allow other places to apply for permission to do the same. The hope is that marijuana available for scientific study could grow in both amount and diversity.
     
    While this will be hailed as a victory for research, it will largely be symbolic, because no matter how much marijuana is available, if access is still difficult, it hardly matters.
    Imagine a product that is in high demand but kept behind a locked door. In response to the demand for the product, someone makes a baffling decision to make more of it but still never unlocks the door.
    Marijuana is that product, and its Schedule I designation is that locked door.
    That is the predicament of medical marijuana.
    Because marijuana is a Schedule I substance (meaning that by definition it has "no currently accepted medical use and a high potential for abuse"), there are significant hurdles to getting the door unlocked.
    Potential researchers typically go to the DEA first, as it grants the license to begin scientific research. Even if a license is granted, to study a Schedule I substance, institutions must have heavy-duty safes and high-grade security systems installed, which can be expensive. There is also the more subjective consideration of getting approval from your academic institution to do the research on a Schedule I status substance in the first place. Even if individual faculty members want to do that research, the university leadership may not want the hassle or the potential fallout of bad press. This happened at the University of Arizona when Dr. Sue Sisley was let go after trying to pursue a medical marijuana trial.
    Sisley eventually had to find private funding for her project, and just in April, seven years after the study was initially proposed, hers became the first DEA approved medical marijuana trial for post-traumatic stress in veterans.
    Then, after years of those bureaucratic hurdles, it is the National Institute on Drug Abuse that has held the final key to the lock. Today, it is the biggest federal public funder of marijuana research and has been the sole supplier of the marijuana itself. Even if more medical marijuana will now be freed up for research, the institute will still have to approve any studies it funds.
    The problem, however, is that last word in NIDA's name: "abuse."
     
    According to Dr. Donald Abrams at the University of San Francisco, whom I interviewed for my documentary "Weed," the institute has a primary mandate to study substances for potential abuse rather than as a medicine. Abrams makes an important point. Even if a study does cross all the hurdles described above, the door may stay locked if the intent is to study the benefits of medical marijuana as opposed to the harm.
    Consider this: A quick (and admittedly non-scientific) search through the U.S. National Library of Medicine pulled up 1,434 papers on medical marijuana over the past five years. That same search revealed only 57 papers on medical marijuana benefits. The vast majority were research into the harm of marijuana, such as "Bad trip due to anticholinergic effect of cannabis," "Cannabis induced pancreatitits" and "Marijuana use and risk of lung cancer." That imbalance paints a highly distorted picture of the harm-benefit ratio.

    Contradictory policy

    The road to medical marijuana research is paved with surprises and hypocrisy nearly everywhere you look.
    While the DEA continues to dig in on Schedule I status, deeming no medical benefit, the U.S. Department of Health and Human Services simultaneously holds a patent on cannabinoids for a wide range of medicinal purposes.
    The DEA continues to place marijuana alongside heroin and LSD as drugs with high abuse potential even though the DEA's own former chief administrative law judge, Francis Young, disagreed with this.
    This is one of many quotes from his 1988 petition (PDF) to unschedule marijuana.
    "In strict medical terms marijuana is far safer than many foods we commonly consume. For example, eating 10 raw potatoes can result in a toxic response. By comparison, it is physically impossible to eat enough marijuana to induce death. Marijuana in its natural form is one of the safest therapeutically active substances known to man. By any measure of rational analysis marijuana can be safely used within the supervised routine of medical care."
    Again, that was from a judge with the DEA itself. And yet nearly 30 years later, little has changed.
    Join the conversation

    See the latest news and share your comments with CNN Health on Facebook and Twitter.

    Whether we realize it or not, we all accept a certain amount of hypocrisy in our daily lives. Maybe we don't always have the energy to call it out or we are too speechless and dumbfounded that no one else seems to have noticed.
    With regard to the hypocrisy of federal medical marijuana policy, however, it is worth summoning the stamina to relentlessly present the facts. The lives of patients -- such as that of Charlotte Figi, whose seizures abated with the use of medical marijuana, and so many others -- depend on it.
    That a plant could provide so much benefit and still remain behind these locked doors is worth speaking up about.

    Highlights from the Hill

    August 2016

    In this Issue

    • DEA Won’t Reschedule Cannabis to Improve Access for Research
    • Amtrak Settles Epilepsy Discrimination Case

    DEA Won’t Reschedule Cannabis to Improve Access for Research

    On Thursday, August 11, 2016 the Drug Enforcement Agency (DEA) announced it would not reschedule cannabis, but would expand the number of sites that can grow cannabis for research. We are disappointed with the announcement because removing cannabis from Schedule I in the Controlled Substances Act would paved the way for new treatments as well as much needed information that can help families make informed choices about medical cannabis.

    We are encouraged that the DEA is considering expanding the number of sites that can grow cannabis for research and will closely monitor the implementation of the proposed expansion. Expansion criteria should not be so burdensome and it does not lead to meaningful expansion of growing sites. Currently it is difficult for scientists and researchers to laboratory-based research studies to better understand how cannabinoid compounds might be working in the brain and to organize clinical trials involving cannabis because it is a Schedule I substance and only the National Institute for Drug Abuse (NIDA) can cultivate cannabis for medical research.

    While the DEA acknowledged some promise for CBD for epilepsy and seizures, they looked at a limited number of studies -- none in epilepsy or children, and none published since 2013. Recent studies and preliminary findings from clinical trials involving cannabis have shown minimal side effects or abuse potential for CBD when used to treat uncontrolled seizures.

    The Epilepsy Foundation will continue to advocate for removing federal barriers to cannabis research and policies that promote innovation for the nearly one million people living with uncontrolled seizures. You can our press release on the DEA announcement at www.epilepsy.com/cannabis.  


    Amtrak Settles Epilepsy Discrimination Case

    The National Railroad Passenger Association, better known as Amtrak, recently settled a disability discrimination lawsuit involving a job applicant with epilepsy. The lawsuit, filed by the Equal Employment Opportunity Commission (EEOC), involved Shawn Moe. 

    In April 2013, Moe applied for a job as a Machinist Journeyman at Amtrak’s mechanical yard in Seattle, Washington.  Amtrak provided a conditional offer of employment, but withdrew the offer after Moe reported a history of epilepsy during a post-offer medical examination.  Amtrak cited safety concerns as its justification for withdrawing the offer.  However, Amtrak failed to consider that Moe had been seizure free with medication for years and that Moe received clearance from his neurologist, who assessed that he could perform all the duties of the job, including work on machinery and heights.

    EEOC filed the lawsuit in August 2015 after attempts to reach a pre-litigation settlement failed. The lawsuit was recently settled through a consent decree, which awards Moe with $112,000 in compensatory damages and lost wages.  Amtrak also agreed to implement a modified ADA policy and train its staff on hiring and assessing for reasonable accommodations. This case is a major victory for job applicants and employees with epilepsy. 

    EEOC’s press release about the settlement can be viewed here.

    Earlier news

    Congressional Appropriations Bills Suggest Funding for CDC and NIH

    On July 14, the House Appropriations Committee approved the fiscal year 2017 Labor, Health and Human Services (LHHS) Appropriations bill, which would provide an increase in several critical research initiatives. We are encouraged that the committee included $33.3 billion for the National Institutes of Health (NIH), $1.25 billion above the fiscal year 2016 enacted level and $2.25 billion above the President’s discretionary budget request. Furthermore, the Brain Research through Application of Innovative Neurotechnologies (BRAIN) Initiative would be funded at $195 million, an increase of $45 million from the previous year.

    On June 7, the Senate Committee on Appropriations, Labor, Health and Human Services, Education, and Related Agencies Subcommittee passed their fiscal year 2017 Labor, HHS & Education Appropriations bill, which includes an increase in funding for epilepsy programs at the Centers for Disease Control and Prevention (CDC).

    The appropriations bills must be passed by the full House and Senate, respectively, before they can go to conference for Senators and Representatives to compromise on language. The Epilepsy Foundation strongly supports federal funding for epilepsy research and programs, and we will continue to monitor the appropriations process for fiscal year 2017.


    Epilepsy Foundation Urges Congress to Support CARERS Act

    On July 12, the Epilepsy Foundation joined several other patient organizations in a group letter led by Americans for Safe Access (ASA) to Senators Grassley (IA) and Leahy (VT) and Representatives Pitts (PA) and Green (TX), urging them to bring the Compassionate Access, Research Expansion, and Respect States (CARERS) Act for a committee vote in the Senate Judiciary Committee and the House Energy and Commerce, Health Subcommittee.

    The Epilepsy Foundation strongly supports federal cannabis legislation that would lift federal barriers to cannabis research and create safe, legal access to medical cannabis in the states, including the CARERS Act.

    You can view the letter and urge your members of Congress to support the CARERS Act at www.epilepsy.com/cannabis.

    On June 21, Beatriz Duque Long, senior director government relations at the Epilepsy Foundation, spoke at a briefing where she explained the Foundation’s support of the CARERS Act. Senators Cory Booker (NJ) and Kirsten Gillibrand (NY) also spoke on the importance of passing the CARERS Act and removing federal barriers to research while protecting individuals in states with medical cannabis programs.


    Senators and Patient Groups Oppose Changes to Six Protected Classes

    Senators Grassley (IA) and Brown (OH) wrote a letter to the Centers for Medicare and Medicaid Services (CMS) opposing the recent recommendations from the Medicare Payment Advisory Commission (MedPAC) which would weaken the six protected classes. Bloomberg News recently highlighted the letter and the dangers of weakening the six protected classes, and featured a quote from Angela Ostrom, our chief legal officer and vice president public policy, reiterating our strong opposition to MedPAC’s recommendations. You can read the article at http://bit.ly/BNACMS.

    Legislation Would Weaken Americans with Disabilities Act

    H.R. 3765, the ADA Education and Reform Act of 2015, recently passed out of the House Judiciary Committee and now makes its way to the full House. This legislation would eliminate the responsibility of businesses to know their obligations under the Americans with Disabilities Act (ADA) and place the burden of ensuring that businesses remain accessible on people with disabilities. The Epilepsy Foundation strongly opposes this legislation and will continue to monitor the bill as it moved forward.

September 3, 2016

  • August 27th thru September 3rd

    Hello DestinyMaker’s,
     
    Today’s effort…..
     
    Running 10 miles
    Cycling 12 miles
     
    January Totals
     
    Running 93 miles
    Cycling   372  miles
     
    February Totals
     
    Running  122
    Cycling 405
     
    March Totals
     
    Running  76
    Cycling 295
     
    April Totals
     
    Running 92
    Cycling 281
     
    May Totals
     
    Running 141
    Cycling  553
     
    June Totals
     
    Running 164
    Cycling 370

     
    July Totals
     
    Running  205
    Cycling  363
     
    August Totals
     
    Running 315
    Cycling 70
    September Totals
    Running 34
    Cycling 32
     
    Avg per Day
     
    Running  4.97 miles
    Cycling   11.07 miles
     
    Avg per Month 
     
    Running  151.37 miles
    Cycling    338.62 miles
     
    Year to date…
     
    Running 1235.63 miles
    Cycling  2745.31 miles
     
     “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.
     
    Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to Sudep what I can do is go the extra mile.
     
    Here is the upcoming schedule of events planned….. Running Across America Date TBD
     
    Previous events…..
    2017 Running Across America June 1st
    2016 This fall training begins
    2015 Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike
     
    Weather for North Miami Beach, Florida
    Today
    MOSTLY_SUNNY
    90° 79°
    Sun
    PARTLY_CLOUDY
    89° 80°
    Mon
    PARTLY_CLOUDY
    88° 81°
    Tue
    PARTLY_CLOUDY
    88° 80°

    If nothing else I am as determined as I am stubborn to give up!

     
    DestinyMaker Strength
    48 marathons in 48 days
    completed 100 mile run
     
    The mind of a poet
    The heart of lion
    A soul from the sea
    Eyes from the sky....

    It's time to stop dreaming and begin pursuing!

    Here is the official crowdfunding page to support my run across America! Any help small or large will be greatly appreciated.

    DestinyMaker's Run Across America for Epilepsy

    Support 'DestinyMaker's Run Across America for Epilepsy' by donating or sharing today!
    generosity.com
     
    The goal is to raise $30,000.
     

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    Welcome back my friends to the show that never ends......

    Under 9 months to go. It's really taking shape. Others are getting involved. I am one step closer to the starting line.

    Starting weight 147 8/2016
    Current weight 154 9/2016
    Goal weight 165 6/2017

    I have added nearly 60 grams of protein and about 1000 calories a day. My weight is going up. I am not in the gym as of yet but even that is arriving soon. I need to get into the best shape of my life. Experience will only help on the mental side of things.

    Atlantic City arrive Monday early evening, leaving from Philadelphia following morning. Flying in, driving home.

    You can't mistake the sound of thunder, nor my feet running with a purpose. Time to chew some asphalt!

    Preparing for summer 2017

    Looking forward to staying hydrated during my training and event next summer when I will be running across America! ‪#‎drinkrehydrate‬

    Rehydrate is a rehydration drink with zero calories, zero sugar, zero caffeine, and zero fat! Above all it provides 3x electrolytes as your avg. sports drink!
    www.drinkrehydrate.com

    Check it out....

    Health/Medical/Pharmaceuticals · 6,074 Likes
    'All working together to make a difference!'
    Emfit MM, Movement Monitor
     
     
     Basic sponsorship is product for logo placement here in blog, twitter and facebook. I am also offering logo placement on a vehicle at $2000. Soon to announce logo placement partnerships.  $1000 on shirt being worn and $2500 for both.  If I could get 5-10 companies it would go a long way toward full funding for the project/event.
     
     
    Poem
     
    There I sat
    being informed by a distant Zulu
    that words were a way of examining
    a moment in time.
     
    Understanding none of this
    was only the reality of my limited
    time here on Earth,
    I was young and my life benign.
     
    The spaces of creation are
    defined by mystery where these occurrences
    I learned can be scripted for further reflection
    where the examined life finds it’s truth.
     
    Only then did I understand that
    destiny and poetry
    lie beneath the core of time.
     
    Decades have passed. I can
    still hear the Zulu’s voice. Originally I wrote
    to control my destiny, now I write to find it’s path.
     
    Poem
     
    When you are willing to die
    for something others are dying from,
     
    When you give up your home, work,
    wage, comfort for their suffering,
     
    When you place the lives of others before your own
    knowing full well the consequences of my actions
     
    When the ridicule outweighs the promise of possibility
    or even the success of your crusade
     
    You will then begin to understand just why
    I am willing to run across America.
     
    Image result for 420

    (CNN)There is really just one salient question when it comes to today's decision by the Drug Enforcement Administration to expand the number of growers of research-grade marijuana, while still not changing the scheduling of marijuana: Will this decision make it significantly easier for scientists to study the medical benefits of marijuana?

     
    The answer sadly is: unlikely. And this is a missed opportunity that could further delay potential therapies to countless people.
    Up until today, the University of Mississippi has been the only federally approved source of research-grade medical marijuana in the United States. In a bit of seemingly positive news today, the DEA also announced it will now allow other places to apply for permission to do the same. The hope is that marijuana available for scientific study could grow in both amount and diversity.
     
    While this will be hailed as a victory for research, it will largely be symbolic, because no matter how much marijuana is available, if access is still difficult, it hardly matters.
    Imagine a product that is in high demand but kept behind a locked door. In response to the demand for the product, someone makes a baffling decision to make more of it but still never unlocks the door.
    Marijuana is that product, and its Schedule I designation is that locked door.
    That is the predicament of medical marijuana.
    Because marijuana is a Schedule I substance (meaning that by definition it has "no currently accepted medical use and a high potential for abuse"), there are significant hurdles to getting the door unlocked.
    Potential researchers typically go to the DEA first, as it grants the license to begin scientific research. Even if a license is granted, to study a Schedule I substance, institutions must have heavy-duty safes and high-grade security systems installed, which can be expensive. There is also the more subjective consideration of getting approval from your academic institution to do the research on a Schedule I status substance in the first place. Even if individual faculty members want to do that research, the university leadership may not want the hassle or the potential fallout of bad press. This happened at the University of Arizona when Dr. Sue Sisley was let go after trying to pursue a medical marijuana trial.
    Sisley eventually had to find private funding for her project, and just in April, seven years after the study was initially proposed, hers became the first DEA approved medical marijuana trial for post-traumatic stress in veterans.
    Then, after years of those bureaucratic hurdles, it is the National Institute on Drug Abuse that has held the final key to the lock. Today, it is the biggest federal public funder of marijuana research and has been the sole supplier of the marijuana itself. Even if more medical marijuana will now be freed up for research, the institute will still have to approve any studies it funds.
    The problem, however, is that last word in NIDA's name: "abuse."
     
    According to Dr. Donald Abrams at the University of San Francisco, whom I interviewed for my documentary "Weed," the institute has a primary mandate to study substances for potential abuse rather than as a medicine. Abrams makes an important point. Even if a study does cross all the hurdles described above, the door may stay locked if the intent is to study the benefits of medical marijuana as opposed to the harm.
    Consider this: A quick (and admittedly non-scientific) search through the U.S. National Library of Medicine pulled up 1,434 papers on medical marijuana over the past five years. That same search revealed only 57 papers on medical marijuana benefits. The vast majority were research into the harm of marijuana, such as "Bad trip due to anticholinergic effect of cannabis," "Cannabis induced pancreatitits" and "Marijuana use and risk of lung cancer." That imbalance paints a highly distorted picture of the harm-benefit ratio.

    Contradictory policy

    The road to medical marijuana research is paved with surprises and hypocrisy nearly everywhere you look.
    While the DEA continues to dig in on Schedule I status, deeming no medical benefit, the U.S. Department of Health and Human Services simultaneously holds a patent on cannabinoids for a wide range of medicinal purposes.
    The DEA continues to place marijuana alongside heroin and LSD as drugs with high abuse potential even though the DEA's own former chief administrative law judge, Francis Young, disagreed with this.
    This is one of many quotes from his 1988 petition (PDF) to unschedule marijuana.
    "In strict medical terms marijuana is far safer than many foods we commonly consume. For example, eating 10 raw potatoes can result in a toxic response. By comparison, it is physically impossible to eat enough marijuana to induce death. Marijuana in its natural form is one of the safest therapeutically active substances known to man. By any measure of rational analysis marijuana can be safely used within the supervised routine of medical care."
    Again, that was from a judge with the DEA itself. And yet nearly 30 years later, little has changed.
    Join the conversation

    See the latest news and share your comments with CNN Health on Facebook and Twitter.

    Whether we realize it or not, we all accept a certain amount of hypocrisy in our daily lives. Maybe we don't always have the energy to call it out or we are too speechless and dumbfounded that no one else seems to have noticed.
    With regard to the hypocrisy of federal medical marijuana policy, however, it is worth summoning the stamina to relentlessly present the facts. The lives of patients -- such as that of Charlotte Figi, whose seizures abated with the use of medical marijuana, and so many others -- depend on it.
    That a plant could provide so much benefit and still remain behind these locked doors is worth speaking up about.

    Highlights from the Hill

    August 2016

    In this Issue

    • DEA Won’t Reschedule Cannabis to Improve Access for Research
    • Amtrak Settles Epilepsy Discrimination Case

    DEA Won’t Reschedule Cannabis to Improve Access for Research

    On Thursday, August 11, 2016 the Drug Enforcement Agency (DEA) announced it would not reschedule cannabis, but would expand the number of sites that can grow cannabis for research. We are disappointed with the announcement because removing cannabis from Schedule I in the Controlled Substances Act would paved the way for new treatments as well as much needed information that can help families make informed choices about medical cannabis.

    We are encouraged that the DEA is considering expanding the number of sites that can grow cannabis for research and will closely monitor the implementation of the proposed expansion. Expansion criteria should not be so burdensome and it does not lead to meaningful expansion of growing sites. Currently it is difficult for scientists and researchers to laboratory-based research studies to better understand how cannabinoid compounds might be working in the brain and to organize clinical trials involving cannabis because it is a Schedule I substance and only the National Institute for Drug Abuse (NIDA) can cultivate cannabis for medical research.

    While the DEA acknowledged some promise for CBD for epilepsy and seizures, they looked at a limited number of studies -- none in epilepsy or children, and none published since 2013. Recent studies and preliminary findings from clinical trials involving cannabis have shown minimal side effects or abuse potential for CBD when used to treat uncontrolled seizures.

    The Epilepsy Foundation will continue to advocate for removing federal barriers to cannabis research and policies that promote innovation for the nearly one million people living with uncontrolled seizures. You can our press release on the DEA announcement at www.epilepsy.com/cannabis.  


    Amtrak Settles Epilepsy Discrimination Case

    The National Railroad Passenger Association, better known as Amtrak, recently settled a disability discrimination lawsuit involving a job applicant with epilepsy. The lawsuit, filed by the Equal Employment Opportunity Commission (EEOC), involved Shawn Moe. 

    In April 2013, Moe applied for a job as a Machinist Journeyman at Amtrak’s mechanical yard in Seattle, Washington.  Amtrak provided a conditional offer of employment, but withdrew the offer after Moe reported a history of epilepsy during a post-offer medical examination.  Amtrak cited safety concerns as its justification for withdrawing the offer.  However, Amtrak failed to consider that Moe had been seizure free with medication for years and that Moe received clearance from his neurologist, who assessed that he could perform all the duties of the job, including work on machinery and heights.

    EEOC filed the lawsuit in August 2015 after attempts to reach a pre-litigation settlement failed. The lawsuit was recently settled through a consent decree, which awards Moe with $112,000 in compensatory damages and lost wages.  Amtrak also agreed to implement a modified ADA policy and train its staff on hiring and assessing for reasonable accommodations. This case is a major victory for job applicants and employees with epilepsy. 

    EEOC’s press release about the settlement can be viewed here.

    Earlier news

    Congressional Appropriations Bills Suggest Funding for CDC and NIH

    On July 14, the House Appropriations Committee approved the fiscal year 2017 Labor, Health and Human Services (LHHS) Appropriations bill, which would provide an increase in several critical research initiatives. We are encouraged that the committee included $33.3 billion for the National Institutes of Health (NIH), $1.25 billion above the fiscal year 2016 enacted level and $2.25 billion above the President’s discretionary budget request. Furthermore, the Brain Research through Application of Innovative Neurotechnologies (BRAIN) Initiative would be funded at $195 million, an increase of $45 million from the previous year.

    On June 7, the Senate Committee on Appropriations, Labor, Health and Human Services, Education, and Related Agencies Subcommittee passed their fiscal year 2017 Labor, HHS & Education Appropriations bill, which includes an increase in funding for epilepsy programs at the Centers for Disease Control and Prevention (CDC).

    The appropriations bills must be passed by the full House and Senate, respectively, before they can go to conference for Senators and Representatives to compromise on language. The Epilepsy Foundation strongly supports federal funding for epilepsy research and programs, and we will continue to monitor the appropriations process for fiscal year 2017.


    Epilepsy Foundation Urges Congress to Support CARERS Act

    On July 12, the Epilepsy Foundation joined several other patient organizations in a group letter led by Americans for Safe Access (ASA) to Senators Grassley (IA) and Leahy (VT) and Representatives Pitts (PA) and Green (TX), urging them to bring the Compassionate Access, Research Expansion, and Respect States (CARERS) Act for a committee vote in the Senate Judiciary Committee and the House Energy and Commerce, Health Subcommittee.

    The Epilepsy Foundation strongly supports federal cannabis legislation that would lift federal barriers to cannabis research and create safe, legal access to medical cannabis in the states, including the CARERS Act.

    You can view the letter and urge your members of Congress to support the CARERS Act at www.epilepsy.com/cannabis.

    On June 21, Beatriz Duque Long, senior director government relations at the Epilepsy Foundation, spoke at a briefing where she explained the Foundation’s support of the CARERS Act. Senators Cory Booker (NJ) and Kirsten Gillibrand (NY) also spoke on the importance of passing the CARERS Act and removing federal barriers to research while protecting individuals in states with medical cannabis programs.


    Senators and Patient Groups Oppose Changes to Six Protected Classes

    Senators Grassley (IA) and Brown (OH) wrote a letter to the Centers for Medicare and Medicaid Services (CMS) opposing the recent recommendations from the Medicare Payment Advisory Commission (MedPAC) which would weaken the six protected classes. Bloomberg News recently highlighted the letter and the dangers of weakening the six protected classes, and featured a quote from Angela Ostrom, our chief legal officer and vice president public policy, reiterating our strong opposition to MedPAC’s recommendations. You can read the article at http://bit.ly/BNACMS.

    Legislation Would Weaken Americans with Disabilities Act

    H.R. 3765, the ADA Education and Reform Act of 2015, recently passed out of the House Judiciary Committee and now makes its way to the full House. This legislation would eliminate the responsibility of businesses to know their obligations under the Americans with Disabilities Act (ADA) and place the burden of ensuring that businesses remain accessible on people with disabilities. The Epilepsy Foundation strongly opposes this legislation and will continue to monitor the bill as it moved forward.

August 26, 2016

  • August 24th thru August 26th

    Hello DestinyMaker’s,
     
    Today’s effort…..
     
    Running 15 miles
    Cycling 0 miles
     
    January Totals
     
    Running 93 miles
    Cycling   372  miles
     
    February Totals
     
    Running  122
    Cycling 405
     
    March Totals
     
    Running  76
    Cycling 295
     
    April Totals
     
    Running 92
    Cycling 281
     
    May Totals
     
    Running 141
    Cycling  553
     
    June Totals
     
    Running 164
    Cycling 370

     
    July Totals
     
    Running  205
    Cycling  363
     
    August Totals
     
    Running 255
    Cycling  50
     
    Avg per Day
     
    Running  4.81 miles
    Cycling   11.66 miles
     
    Avg per Month 
     
    Running  114.66 miles
    Cycling    379.33 miles
     
    Year to date…
     
    Running 1147.63 miles
    Cycling  2697.31 miles
     
     “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.
     
    Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to Sudep what I can do is go the extra mile.
     
    Here is the upcoming schedule of events planned….. Running Across America Date TBD
     
    Previous events…..
    2017 Running Across America June 1st
    2016 This fall training begins
    2015 Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike
     
    Weather for North Miami Beach, Florida
    Today
    ISOLATED_THUNDERSTORMS
    88° 81°
    Fri
    PARTLY_CLOUDY
    88° 81°
    Sat
    SCATTERED_THUNDERSTORMS
    86° 80°
    Sun
    SCATTERED_THUNDERSTORMS
    85° 80°

    If nothing else I am as determined as I am stubborn to give up!

     
    DestinyMaker Strength
    48 marathons in 48 days
    completed 100 mile run
     
    The mind of a poet
    The heart of lion
    A soul from the sea
    Eyes from the sky....

    It's time to stop dreaming and begin pursuing!

    Here is the official crowdfunding page to support my run across America! Any help small or large will be greatly appreciated.

    DestinyMaker's Run Across America for Epilepsy

    Support 'DestinyMaker's Run Across America for Epilepsy' by donating or sharing today!
    generosity.com
     
    The goal is to raise $30,000.
     

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    Welcome back my friends to the show that never ends......

    Currently averaging 70 miles a week running. I must stay speed wise as if I am on the run across America NOW! No more then 5mph and no slower then 4mph. During the run there will be days I run entire day's worth of miles. Other days run 2 hours, eat and repeat 3 more times. Bout 36 miles. Elevation, weather will play a part. I have started jogging up 30 flights of stairs. Going for runs mid day for intense heat. I am doing my part to prepare, who is going to do their part and help!

    I will not turn back from the starting line, I do not fear what others tell me I am unable to accomplish. Back seat drivers, arm chair quarterbacks bring it on!!!!

    After posting this I have not heard from my brother......

    Signs Of Alcoholism

    Friends or family tell you that they’re concerned with your drinking
    Dangerous alcohol driven behavior like drinking and driving
    Becoming angry or violent while drinking
    You miss work because of alcohol
    You drink at work
    No longer enjoy sober activities that used to bring you pleasure
    You can’t just limit yourself to “1″ drink without being miserable
    You experience physical withdrawal symptoms when you don’t drink
    You hide your drinking from those around you

    You can't mistake the sound of thunder, nor my feet running with a purpose. Time to chew some asphalt!

    Preparing for summer 2017

    Looking forward to staying hydrated during my training and event next summer when I will be running across America! ‪#‎drinkrehydrate‬

    Rehydrate is a rehydration drink with zero calories, zero sugar, zero caffeine, and zero fat! Above all it provides 3x electrolytes as your avg. sports drink!
    www.drinkrehydrate.com

    Check it out....

    Health/Medical/Pharmaceuticals · 6,074 Likes
    'All working together to make a difference!'
    Emfit MM, Movement Monitor
     Basic sponsorship is product for logo placement here in blog, twitter and facebook. I am also offering logo placement on a vehicle at $2000. Soon to announce logo placement partnerships.  $1000 on shirt being worn and $2500 for both.  If I could get 5-10 companies it would go a long way toward full funding for the project/event.
    Poem
     
    There I sat
    being informed by a distant Zulu
    that words were a way of examining
    a moment in time.
     
    Understanding none of this
    was only the reality of my limited
    time here on Earth,
    I was young and my life benign.
     
    The spaces of creation are
    defined by mystery where these occurrences
    I learned can be scripted for further reflection
    where the examined life finds it’s truth.
     
    Only then did I understand that
    destiny and poetry
    lie beneath the core of time.
     
    Decades have passed. I can
    still hear the Zulu’s voice. Originally I wrote
    to control my destiny, now I write to find it’s path.
     
    Poem
     
    When you are willing to die
    for something others are dying from,
     
    When you give up your home, work,
    wage, comfort for their suffering,
     
    When you place the lives of others before your own
    knowing full well the consequences of my actions
     
    When the ridicule outweighs the promise of possibility
    or even the success of your crusade
     
    You will then begin to understand just why
    I am willing to run across America.
     
    Image result for 420

    (CNN)There is really just one salient question when it comes to today's decision by the Drug Enforcement Administration to expand the number of growers of research-grade marijuana, while still not changing the scheduling of marijuana: Will this decision make it significantly easier for scientists to study the medical benefits of marijuana?

     
    The answer sadly is: unlikely. And this is a missed opportunity that could further delay potential therapies to countless people.
    Up until today, the University of Mississippi has been the only federally approved source of research-grade medical marijuana in the United States. In a bit of seemingly positive news today, the DEA also announced it will now allow other places to apply for permission to do the same. The hope is that marijuana available for scientific study could grow in both amount and diversity.
     
    While this will be hailed as a victory for research, it will largely be symbolic, because no matter how much marijuana is available, if access is still difficult, it hardly matters.
    Imagine a product that is in high demand but kept behind a locked door. In response to the demand for the product, someone makes a baffling decision to make more of it but still never unlocks the door.
    Marijuana is that product, and its Schedule I designation is that locked door.
    That is the predicament of medical marijuana.
    Because marijuana is a Schedule I substance (meaning that by definition it has "no currently accepted medical use and a high potential for abuse"), there are significant hurdles to getting the door unlocked.
    Potential researchers typically go to the DEA first, as it grants the license to begin scientific research. Even if a license is granted, to study a Schedule I substance, institutions must have heavy-duty safes and high-grade security systems installed, which can be expensive. There is also the more subjective consideration of getting approval from your academic institution to do the research on a Schedule I status substance in the first place. Even if individual faculty members want to do that research, the university leadership may not want the hassle or the potential fallout of bad press. This happened at the University of Arizona when Dr. Sue Sisley was let go after trying to pursue a medical marijuana trial.
    Sisley eventually had to find private funding for her project, and just in April, seven years after the study was initially proposed, hers became the first DEA approved medical marijuana trial for post-traumatic stress in veterans.
    Then, after years of those bureaucratic hurdles, it is the National Institute on Drug Abuse that has held the final key to the lock. Today, it is the biggest federal public funder of marijuana research and has been the sole supplier of the marijuana itself. Even if more medical marijuana will now be freed up for research, the institute will still have to approve any studies it funds.
    The problem, however, is that last word in NIDA's name: "abuse."
     
    According to Dr. Donald Abrams at the University of San Francisco, whom I interviewed for my documentary "Weed," the institute has a primary mandate to study substances for potential abuse rather than as a medicine. Abrams makes an important point. Even if a study does cross all the hurdles described above, the door may stay locked if the intent is to study the benefits of medical marijuana as opposed to the harm.
    Consider this: A quick (and admittedly non-scientific) search through the U.S. National Library of Medicine pulled up 1,434 papers on medical marijuana over the past five years. That same search revealed only 57 papers on medical marijuana benefits. The vast majority were research into the harm of marijuana, such as "Bad trip due to anticholinergic effect of cannabis," "Cannabis induced pancreatitits" and "Marijuana use and risk of lung cancer." That imbalance paints a highly distorted picture of the harm-benefit ratio.

    Contradictory policy

    The road to medical marijuana research is paved with surprises and hypocrisy nearly everywhere you look.
    While the DEA continues to dig in on Schedule I status, deeming no medical benefit, the U.S. Department of Health and Human Services simultaneously holds a patent on cannabinoids for a wide range of medicinal purposes.
    The DEA continues to place marijuana alongside heroin and LSD as drugs with high abuse potential even though the DEA's own former chief administrative law judge, Francis Young, disagreed with this.
    This is one of many quotes from his 1988 petition (PDF) to unschedule marijuana.
    "In strict medical terms marijuana is far safer than many foods we commonly consume. For example, eating 10 raw potatoes can result in a toxic response. By comparison, it is physically impossible to eat enough marijuana to induce death. Marijuana in its natural form is one of the safest therapeutically active substances known to man. By any measure of rational analysis marijuana can be safely used within the supervised routine of medical care."
    Again, that was from a judge with the DEA itself. And yet nearly 30 years later, little has changed.
    Join the conversation

    See the latest news and share your comments with CNN Health on Facebook and Twitter.

    Whether we realize it or not, we all accept a certain amount of hypocrisy in our daily lives. Maybe we don't always have the energy to call it out or we are too speechless and dumbfounded that no one else seems to have noticed.
    With regard to the hypocrisy of federal medical marijuana policy, however, it is worth summoning the stamina to relentlessly present the facts. The lives of patients -- such as that of Charlotte Figi, whose seizures abated with the use of medical marijuana, and so many others -- depend on it.
    That a plant could provide so much benefit and still remain behind these locked doors is worth speaking up about.

    Highlights from the Hill

    August 2016

    In this Issue

    • DEA Won’t Reschedule Cannabis to Improve Access for Research
    • Amtrak Settles Epilepsy Discrimination Case

    DEA Won’t Reschedule Cannabis to Improve Access for Research

    On Thursday, August 11, 2016 the Drug Enforcement Agency (DEA) announced it would not reschedule cannabis, but would expand the number of sites that can grow cannabis for research. We are disappointed with the announcement because removing cannabis from Schedule I in the Controlled Substances Act would paved the way for new treatments as well as much needed information that can help families make informed choices about medical cannabis.

    We are encouraged that the DEA is considering expanding the number of sites that can grow cannabis for research and will closely monitor the implementation of the proposed expansion. Expansion criteria should not be so burdensome and it does not lead to meaningful expansion of growing sites. Currently it is difficult for scientists and researchers to laboratory-based research studies to better understand how cannabinoid compounds might be working in the brain and to organize clinical trials involving cannabis because it is a Schedule I substance and only the National Institute for Drug Abuse (NIDA) can cultivate cannabis for medical research.

    While the DEA acknowledged some promise for CBD for epilepsy and seizures, they looked at a limited number of studies -- none in epilepsy or children, and none published since 2013. Recent studies and preliminary findings from clinical trials involving cannabis have shown minimal side effects or abuse potential for CBD when used to treat uncontrolled seizures.

    The Epilepsy Foundation will continue to advocate for removing federal barriers to cannabis research and policies that promote innovation for the nearly one million people living with uncontrolled seizures. You can our press release on the DEA announcement at www.epilepsy.com/cannabis.  


    Amtrak Settles Epilepsy Discrimination Case

    The National Railroad Passenger Association, better known as Amtrak, recently settled a disability discrimination lawsuit involving a job applicant with epilepsy. The lawsuit, filed by the Equal Employment Opportunity Commission (EEOC), involved Shawn Moe. 

    In April 2013, Moe applied for a job as a Machinist Journeyman at Amtrak’s mechanical yard in Seattle, Washington.  Amtrak provided a conditional offer of employment, but withdrew the offer after Moe reported a history of epilepsy during a post-offer medical examination.  Amtrak cited safety concerns as its justification for withdrawing the offer.  However, Amtrak failed to consider that Moe had been seizure free with medication for years and that Moe received clearance from his neurologist, who assessed that he could perform all the duties of the job, including work on machinery and heights.

    EEOC filed the lawsuit in August 2015 after attempts to reach a pre-litigation settlement failed. The lawsuit was recently settled through a consent decree, which awards Moe with $112,000 in compensatory damages and lost wages.  Amtrak also agreed to implement a modified ADA policy and train its staff on hiring and assessing for reasonable accommodations. This case is a major victory for job applicants and employees with epilepsy. 

    EEOC’s press release about the settlement can be viewed here.

    Earlier news

    Congressional Appropriations Bills Suggest Funding for CDC and NIH

    On July 14, the House Appropriations Committee approved the fiscal year 2017 Labor, Health and Human Services (LHHS) Appropriations bill, which would provide an increase in several critical research initiatives. We are encouraged that the committee included $33.3 billion for the National Institutes of Health (NIH), $1.25 billion above the fiscal year 2016 enacted level and $2.25 billion above the President’s discretionary budget request. Furthermore, the Brain Research through Application of Innovative Neurotechnologies (BRAIN) Initiative would be funded at $195 million, an increase of $45 million from the previous year.

    On June 7, the Senate Committee on Appropriations, Labor, Health and Human Services, Education, and Related Agencies Subcommittee passed their fiscal year 2017 Labor, HHS & Education Appropriations bill, which includes an increase in funding for epilepsy programs at the Centers for Disease Control and Prevention (CDC).

    The appropriations bills must be passed by the full House and Senate, respectively, before they can go to conference for Senators and Representatives to compromise on language. The Epilepsy Foundation strongly supports federal funding for epilepsy research and programs, and we will continue to monitor the appropriations process for fiscal year 2017.


    Epilepsy Foundation Urges Congress to Support CARERS Act

    On July 12, the Epilepsy Foundation joined several other patient organizations in a group letter led by Americans for Safe Access (ASA) to Senators Grassley (IA) and Leahy (VT) and Representatives Pitts (PA) and Green (TX), urging them to bring the Compassionate Access, Research Expansion, and Respect States (CARERS) Act for a committee vote in the Senate Judiciary Committee and the House Energy and Commerce, Health Subcommittee.

    The Epilepsy Foundation strongly supports federal cannabis legislation that would lift federal barriers to cannabis research and create safe, legal access to medical cannabis in the states, including the CARERS Act.

    You can view the letter and urge your members of Congress to support the CARERS Act at www.epilepsy.com/cannabis.

    On June 21, Beatriz Duque Long, senior director government relations at the Epilepsy Foundation, spoke at a briefing where she explained the Foundation’s support of the CARERS Act. Senators Cory Booker (NJ) and Kirsten Gillibrand (NY) also spoke on the importance of passing the CARERS Act and removing federal barriers to research while protecting individuals in states with medical cannabis programs.


    Senators and Patient Groups Oppose Changes to Six Protected Classes

    Senators Grassley (IA) and Brown (OH) wrote a letter to the Centers for Medicare and Medicaid Services (CMS) opposing the recent recommendations from the Medicare Payment Advisory Commission (MedPAC) which would weaken the six protected classes. Bloomberg News recently highlighted the letter and the dangers of weakening the six protected classes, and featured a quote from Angela Ostrom, our chief legal officer and vice president public policy, reiterating our strong opposition to MedPAC’s recommendations. You can read the article at http://bit.ly/BNACMS.

    Legislation Would Weaken Americans with Disabilities Act

    H.R. 3765, the ADA Education and Reform Act of 2015, recently passed out of the House Judiciary Committee and now makes its way to the full House. This legislation would eliminate the responsibility of businesses to know their obligations under the Americans with Disabilities Act (ADA) and place the burden of ensuring that businesses remain accessible on people with disabilities. The Epilepsy Foundation strongly opposes this legislation and will continue to monitor the bill as it moved forward.

August 23, 2016

  • August 20th thru August 23rd

    Hello DestinyMaker’s,
     
    Today’s effort…..
     
    Running 10 miles
    Cycling 0 miles
     
    January Totals
     
    Running 93 miles
    Cycling   372  miles
     
    February Totals
     
    Running  122
    Cycling 405
     
    March Totals
     
    Running  76
    Cycling 295
     
    April Totals
     
    Running 92
    Cycling 281
     
    May Totals
     
    Running 141
    Cycling  553
     
    June Totals
     
    Running 164
    Cycling 370

     
    July Totals
     
    Running  205
    Cycling  363
     
    August Totals
     
    Running 220
    Cycling  50
     
    Avg per Day
     
    Running  4.69 miles
    Cycling   11.72 miles
     
    Avg per Month 
     
    Running  114.66 miles
    Cycling    379.33 miles
     
    Year to date…
     
    Running 1112.63 miles
    Cycling  2697.31 miles
     
     “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.
     
    Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to Sudep what I can do is go the extra mile.
     
    Here is the upcoming schedule of events planned….. Running Across America Date TBD
     
    Previous events…..
    2017 Running Across America June 1st
    2016 This fall training begins
    2015 Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike
    Weather for North Miami Beach, Florida
    Today
    MOSTLY_SUNNY
    91° 81°
    Wed
    SCATTERED_THUNDERSTORMS
    89° 80°
    Thu
    SCATTERED_THUNDERSTORMS
    88° 80°
    Fri
    SCATTERED_THUNDERSTORMS
    89° 79°

     

    If nothing else I am as determined as I am stubborn to give up!

     
    DestinyMaker Strength
    48 marathons in 48 days
    completed 100 mile run
     
    The mind of a poet
    The heart of lion
    A soul from the sea
    Eyes from the sky....

    It's time to stop dreaming and begin pursuing!

    Here is the official crowdfunding page to support my run across America! Any help small or large will be greatly appreciated.

    DestinyMaker's Run Across America for Epilepsy

    Support 'DestinyMaker's Run Across America for Epilepsy' by donating or sharing today!
    generosity.com
     
    The goal is to raise $30,000.
     

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    Welcome back my friends to the show that never ends......

    It's a beautiful start to the day. Yes I am having in dining room coffee, reading articles of interest and messages received from around the world. I can sense the energy of my purpose. Others have entered my life who have allowed me to reclaim the position of possibility and that has made all the difference in the world. When you work with Hollywood (an award winning actress) and you feel like you are making a difference in another person's life it is so rewarding. It's been a great first 4 days. Now she travels until Sunday but we pick it up again on Monday.


    Looking forward to staying hydrated during my training and event next summer when I will be running across America! ‪#‎drinkrehydrate‬

    Rehydrate is a rehydration drink with zero calories, zero sugar, zero caffeine, and zero fat! Above all it provides 3x electrolytes as your avg. sports drink!
    www.drinkrehydrate.com
     

    Basic sponsorship is product for logo placement here in blog, twitter and facebook. I am also offering logo placement on a vehicle at $2000. Soon to announce logo placement partnerships.  $1000 on shirt being worn and $2500 for both.  If I could get 5-10 companies it would go a long way toward full funding for the project/event.

     

    Check it out....

    Health/Medical/Pharmaceuticals · 6,074 Likes
    'All working together to make a difference!'
    Emfit MM, Movement Monitor
     

    Dignity is a noble cause to ascertain. It is not afforded as an entitlement. It's relevant to ones self esteem cutting into the outer edges of ego. It is not the end to ones means nor does it direct your fate. It does allow others to see the compassion in your life.

    Patience can be steeped from meditation. It allows for confrontation to be avoided or words to be misspoken. Others will see you as a calming influence during clashes of cultures and the meeting of our minds.

    Reason offers us opportunity to separate fact from fiction, dream from reality. It's the common denominator sewing together right from wrong, truth and dishonesty. It is to be believed that your judgment have no malice.

     

    On June 1st 2017 I WILL begin running across America. Here is Day 1. 34 miles.

    Here it is day 1. Incredible!!! With other applications I can actually see the roads I will be traveling. Later in the today's post I will tell you why after I give you the reasons.
     

    Day 2 of running across America 2017....from sea level to over 2000 ft!!

    If on the road for 60 days running I expect costs if nothing is sponsored such as vehicle, hotels, food the avg for each day to be $400 a day $24000 in total. Any sponsored vehicle(s), volunteer(s) driver, products such as clothes, sneakers many other supplies all will bring cost down. Companies are in contact offering products and others inside the industry are reaching out! Some of these costs will help offset personal bills after I am done while recovering! I will raise money for Epilepsy by getting a number to text a donation which will be seen in all print and on Vehicle following me as Thousands of cars and people will see it. More on this to follow as I am awaiting word on partnering on this run. One thing bout waiting on word is you must implement your plan while others are discussing it.
     

    What I am up against pales in comparison to the suffering children go through and their parents witness.

    The stigma that teenagers feel from the shame and secrecy they live with.

    How about the adult who has lived a life of never knowing, changed relationships or surgeries gone through.

    How bout those who are gone or their love ones left behind. You see the reasons but please never forget why.....

    I can't. I remember all to well. I do not have the strength to give up!

    In a perfect world around May 25th I will drive west in a vehicle that is packed with supplies. This vehicle will be wrapped with a picture of me running asking for help, have the logo's of companies, a number to text a donation. Faces of children I am running for.

    Once I arrive I hope to have a driver who will take over. Hoping for a volunteer though a small amount could be given. Once I start running I can't be driving. Worried about factors out of my control.

    It's never to early preparing. Especially when obstacles remain. I will though not be deterred by influences I am able to control. What I can do is be ready. I will get to the starting line. Then it will be up to others to get me across America. The roads are long and unforgiving.

    Hats, I have had to wear a few, lost a couple, worn out some, tipped my cap to many, even been White hatted.

    Masks, I have seen yours through the ones I used to wear. I have even fooled myself thinking it was me wearing yours.

    Sleeves, you can see all I am pressed into the frayed fabric, used to monogram my initials, worn them folded, rarely buttoned.

    Shoes, careful while stepping in the ones you use, tread lightly should you step in mine, tie your laces tight.

     
    Poem
     
    There I sat
    being informed by a distant Zulu
    that words were a way of examining
    a moment in time.
     
    Understanding none of this
    was only the reality of my limited
    time here on Earth,
    I was young and my life benign.
     
    The spaces of creation are
    defined by mystery where these occurrences
    I learned can be scripted for further reflection
    where the examined life finds it’s truth.
     
    Only then did I understand that
    destiny and poetry
    lie beneath the core of time.
     
    Decades have passed. I can
    still hear the Zulu’s voice. Originally I wrote
    to control my destiny, now I write to find it’s path.
     
    Poem
     
    When you are willing to die
    for something others are dying from,
     
    When you give up your home, work,
    wage, comfort for their suffering,
     
    When you place the lives of others before your own
    knowing full well the consequences of my actions
     
    When the ridicule outweighs the promise of possibility
    or even the success of your crusade
     
    You will then begin to understand just why
    I am willing to run across America.
     
    Image result for 420

    (CNN)There is really just one salient question when it comes to today's decision by the Drug Enforcement Administration to expand the number of growers of research-grade marijuana, while still not changing the scheduling of marijuana: Will this decision make it significantly easier for scientists to study the medical benefits of marijuana?

     
    The answer sadly is: unlikely. And this is a missed opportunity that could further delay potential therapies to countless people.
    Up until today, the University of Mississippi has been the only federally approved source of research-grade medical marijuana in the United States. In a bit of seemingly positive news today, the DEA also announced it will now allow other places to apply for permission to do the same. The hope is that marijuana available for scientific study could grow in both amount and diversity.
     
    While this will be hailed as a victory for research, it will largely be symbolic, because no matter how much marijuana is available, if access is still difficult, it hardly matters.
    Imagine a product that is in high demand but kept behind a locked door. In response to the demand for the product, someone makes a baffling decision to make more of it but still never unlocks the door.
    Marijuana is that product, and its Schedule I designation is that locked door.
    That is the predicament of medical marijuana.
    Because marijuana is a Schedule I substance (meaning that by definition it has "no currently accepted medical use and a high potential for abuse"), there are significant hurdles to getting the door unlocked.
    Potential researchers typically go to the DEA first, as it grants the license to begin scientific research. Even if a license is granted, to study a Schedule I substance, institutions must have heavy-duty safes and high-grade security systems installed, which can be expensive. There is also the more subjective consideration of getting approval from your academic institution to do the research on a Schedule I status substance in the first place. Even if individual faculty members want to do that research, the university leadership may not want the hassle or the potential fallout of bad press. This happened at the University of Arizona when Dr. Sue Sisley was let go after trying to pursue a medical marijuana trial.
    Sisley eventually had to find private funding for her project, and just in April, seven years after the study was initially proposed, hers became the first DEA approved medical marijuana trial for post-traumatic stress in veterans.
    Then, after years of those bureaucratic hurdles, it is the National Institute on Drug Abuse that has held the final key to the lock. Today, it is the biggest federal public funder of marijuana research and has been the sole supplier of the marijuana itself. Even if more medical marijuana will now be freed up for research, the institute will still have to approve any studies it funds.
    The problem, however, is that last word in NIDA's name: "abuse."
     
    According to Dr. Donald Abrams at the University of San Francisco, whom I interviewed for my documentary "Weed," the institute has a primary mandate to study substances for potential abuse rather than as a medicine. Abrams makes an important point. Even if a study does cross all the hurdles described above, the door may stay locked if the intent is to study the benefits of medical marijuana as opposed to the harm.
    Consider this: A quick (and admittedly non-scientific) search through the U.S. National Library of Medicine pulled up 1,434 papers on medical marijuana over the past five years. That same search revealed only 57 papers on medical marijuana benefits. The vast majority were research into the harm of marijuana, such as "Bad trip due to anticholinergic effect of cannabis," "Cannabis induced pancreatitits" and "Marijuana use and risk of lung cancer." That imbalance paints a highly distorted picture of the harm-benefit ratio.

    Contradictory policy

    The road to medical marijuana research is paved with surprises and hypocrisy nearly everywhere you look.
    While the DEA continues to dig in on Schedule I status, deeming no medical benefit, the U.S. Department of Health and Human Services simultaneously holds a patent on cannabinoids for a wide range of medicinal purposes.
    The DEA continues to place marijuana alongside heroin and LSD as drugs with high abuse potential even though the DEA's own former chief administrative law judge, Francis Young, disagreed with this.
    This is one of many quotes from his 1988 petition (PDF) to unschedule marijuana.
    "In strict medical terms marijuana is far safer than many foods we commonly consume. For example, eating 10 raw potatoes can result in a toxic response. By comparison, it is physically impossible to eat enough marijuana to induce death. Marijuana in its natural form is one of the safest therapeutically active substances known to man. By any measure of rational analysis marijuana can be safely used within the supervised routine of medical care."
    Again, that was from a judge with the DEA itself. And yet nearly 30 years later, little has changed.
    Join the conversation

    See the latest news and share your comments with CNN Health on Facebook and Twitter.

    Whether we realize it or not, we all accept a certain amount of hypocrisy in our daily lives. Maybe we don't always have the energy to call it out or we are too speechless and dumbfounded that no one else seems to have noticed.
    With regard to the hypocrisy of federal medical marijuana policy, however, it is worth summoning the stamina to relentlessly present the facts. The lives of patients -- such as that of Charlotte Figi, whose seizures abated with the use of medical marijuana, and so many others -- depend on it.
    That a plant could provide so much benefit and still remain behind these locked doors is worth speaking up about.

    Highlights from the Hill

    August 2016

    In this Issue

    • DEA Won’t Reschedule Cannabis to Improve Access for Research
    • Amtrak Settles Epilepsy Discrimination Case

    DEA Won’t Reschedule Cannabis to Improve Access for Research

    On Thursday, August 11, 2016 the Drug Enforcement Agency (DEA) announced it would not reschedule cannabis, but would expand the number of sites that can grow cannabis for research. We are disappointed with the announcement because removing cannabis from Schedule I in the Controlled Substances Act would paved the way for new treatments as well as much needed information that can help families make informed choices about medical cannabis.

    We are encouraged that the DEA is considering expanding the number of sites that can grow cannabis for research and will closely monitor the implementation of the proposed expansion. Expansion criteria should not be so burdensome and it does not lead to meaningful expansion of growing sites. Currently it is difficult for scientists and researchers to laboratory-based research studies to better understand how cannabinoid compounds might be working in the brain and to organize clinical trials involving cannabis because it is a Schedule I substance and only the National Institute for Drug Abuse (NIDA) can cultivate cannabis for medical research.

    While the DEA acknowledged some promise for CBD for epilepsy and seizures, they looked at a limited number of studies -- none in epilepsy or children, and none published since 2013. Recent studies and preliminary findings from clinical trials involving cannabis have shown minimal side effects or abuse potential for CBD when used to treat uncontrolled seizures.

    The Epilepsy Foundation will continue to advocate for removing federal barriers to cannabis research and policies that promote innovation for the nearly one million people living with uncontrolled seizures. You can our press release on the DEA announcement at www.epilepsy.com/cannabis.  


    Amtrak Settles Epilepsy Discrimination Case

    The National Railroad Passenger Association, better known as Amtrak, recently settled a disability discrimination lawsuit involving a job applicant with epilepsy. The lawsuit, filed by the Equal Employment Opportunity Commission (EEOC), involved Shawn Moe. 

    In April 2013, Moe applied for a job as a Machinist Journeyman at Amtrak’s mechanical yard in Seattle, Washington.  Amtrak provided a conditional offer of employment, but withdrew the offer after Moe reported a history of epilepsy during a post-offer medical examination.  Amtrak cited safety concerns as its justification for withdrawing the offer.  However, Amtrak failed to consider that Moe had been seizure free with medication for years and that Moe received clearance from his neurologist, who assessed that he could perform all the duties of the job, including work on machinery and heights.

    EEOC filed the lawsuit in August 2015 after attempts to reach a pre-litigation settlement failed. The lawsuit was recently settled through a consent decree, which awards Moe with $112,000 in compensatory damages and lost wages.  Amtrak also agreed to implement a modified ADA policy and train its staff on hiring and assessing for reasonable accommodations. This case is a major victory for job applicants and employees with epilepsy. 

    EEOC’s press release about the settlement can be viewed here.

    Earlier news

    Congressional Appropriations Bills Suggest Funding for CDC and NIH

    On July 14, the House Appropriations Committee approved the fiscal year 2017 Labor, Health and Human Services (LHHS) Appropriations bill, which would provide an increase in several critical research initiatives. We are encouraged that the committee included $33.3 billion for the National Institutes of Health (NIH), $1.25 billion above the fiscal year 2016 enacted level and $2.25 billion above the President’s discretionary budget request. Furthermore, the Brain Research through Application of Innovative Neurotechnologies (BRAIN) Initiative would be funded at $195 million, an increase of $45 million from the previous year.

    On June 7, the Senate Committee on Appropriations, Labor, Health and Human Services, Education, and Related Agencies Subcommittee passed their fiscal year 2017 Labor, HHS & Education Appropriations bill, which includes an increase in funding for epilepsy programs at the Centers for Disease Control and Prevention (CDC).

    The appropriations bills must be passed by the full House and Senate, respectively, before they can go to conference for Senators and Representatives to compromise on language. The Epilepsy Foundation strongly supports federal funding for epilepsy research and programs, and we will continue to monitor the appropriations process for fiscal year 2017.


    Epilepsy Foundation Urges Congress to Support CARERS Act

    On July 12, the Epilepsy Foundation joined several other patient organizations in a group letter led by Americans for Safe Access (ASA) to Senators Grassley (IA) and Leahy (VT) and Representatives Pitts (PA) and Green (TX), urging them to bring the Compassionate Access, Research Expansion, and Respect States (CARERS) Act for a committee vote in the Senate Judiciary Committee and the House Energy and Commerce, Health Subcommittee.

    The Epilepsy Foundation strongly supports federal cannabis legislation that would lift federal barriers to cannabis research and create safe, legal access to medical cannabis in the states, including the CARERS Act.

    You can view the letter and urge your members of Congress to support the CARERS Act at www.epilepsy.com/cannabis.

    On June 21, Beatriz Duque Long, senior director government relations at the Epilepsy Foundation, spoke at a briefing where she explained the Foundation’s support of the CARERS Act. Senators Cory Booker (NJ) and Kirsten Gillibrand (NY) also spoke on the importance of passing the CARERS Act and removing federal barriers to research while protecting individuals in states with medical cannabis programs.


    Senators and Patient Groups Oppose Changes to Six Protected Classes

    Senators Grassley (IA) and Brown (OH) wrote a letter to the Centers for Medicare and Medicaid Services (CMS) opposing the recent recommendations from the Medicare Payment Advisory Commission (MedPAC) which would weaken the six protected classes. Bloomberg News recently highlighted the letter and the dangers of weakening the six protected classes, and featured a quote from Angela Ostrom, our chief legal officer and vice president public policy, reiterating our strong opposition to MedPAC’s recommendations. You can read the article at http://bit.ly/BNACMS.

    Legislation Would Weaken Americans with Disabilities Act

    H.R. 3765, the ADA Education and Reform Act of 2015, recently passed out of the House Judiciary Committee and now makes its way to the full House. This legislation would eliminate the responsibility of businesses to know their obligations under the Americans with Disabilities Act (ADA) and place the burden of ensuring that businesses remain accessible on people with disabilities. The Epilepsy Foundation strongly opposes this legislation and will continue to monitor the bill as it moved forward.

August 19, 2016

  • August 16th thru August 19th

    Hello DestinyMaker’s,
     
    Today’s effort…..
     
    Running 10 miles
    Cycling 0 miles
     
    January Totals
     
    Running 93 miles
    Cycling   372  miles
     
    February Totals
     
    Running  122
    Cycling 405
     
    March Totals
     
    Running  76
    Cycling 295
     
    April Totals
     
    Running 92
    Cycling 281
     
    May Totals
     
    Running 141
    Cycling  553
     
    June Totals
     
    Running 164
    Cycling 370

     
    July Totals
     
    Running  205
    Cycling  363
     
    August Totals
     
    Running 180
    Cycling  50
     
    Avg per Day
     
    Running  4.59 miles
    Cycling   11.75 miles
     
    Avg per Month 
     
    Running  114.66 miles
    Cycling    379.33 miles
     
    Year to date…
     
    Running 1072.63 miles
    Cycling  2697.31 miles
     
     “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.
     
    Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to Sudep what I can do is go the extra mile.
     
    Here is the upcoming schedule of events planned….. Running Across America Date TBD
     
    Previous events…..
    2017 Running Across America
    2016 This fall training begins
    2015 Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike
     
    Weather for North Miami Beach, Florida
    Today
    PARTLY_CLOUDY
    89° 77°
    Sat
    MOSTLY_SUNNY
    90° 78°
    Sun
    MOSTLY_SUNNY
    91° 79°
    Mon
    MOSTLY_SUNNY
    90° 79°

     

    If nothing else I am as determined as I am stubborn to give up!

     
    DestinyMaker Strength
    48 marathons in 48 days
    completed 100 mile run
     
    The mind of a poet
    The heart of lion
    A soul from the sea
    Eyes from the sky....

    It's time to stop dreaming and begin pursuing!

    Here is the official crowdfunding page to support my run across America! Any help small or large will be greatly appreciated.

    Support 'DestinyMaker's Run Across America for Epilepsy' by donating or sharing today!
    generosity.com
     
    The goal is to raise $30,000.
     

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    Welcome back my friends to the show that never ends......

    Plans are being drawn up. Sponsors coming on board. Yep 2017 I am back bigger and more determined then ever before!

    Yes indeed, slowly but surely the focus is returning, purpose has been restored. September 1st this blog will be more active.

    During the run I must (even I have limits) have a vehicle following me. Preferable one that sleeps 2. Holds all supplies. If we arrive at campsite driver will sleep in tent while Maribel and I in vehicle. If we arrive at hotel driver will stay in vehicle and we will stay in hotel. I need a vehicle sponsor!

    I need a driver(s). Vehicle needs to be wrapped letting all who drive by to see why I am running across America.

    So here goes.....
     
    1. Do you or anyone you know who could supply one?
     
    2. Companies are offering supplies!!!! This is awesome.
    Ranging from recovery to refueling.
     
    3. Reality check I am unable to sustain myself.
    It's been months since the final mile of my last event. Up to that moment I had over 40,000 straight days of dedication and discipline. While the dedication has never wavered the single most difficult to recapture is the discipline..Are. my supplies prepared the night before. While running never more then 3 hours .It's August how long do I really need to run a day now? I only need the commitment. Not slower then 4mph and never faster then 5. Am I fueling properly using the methods I have perfected for myself. Am I staying on my caloric curve upward.
    Poem
     
    There I sat
    being informed by a distant Zulu
    that words were a way of examining
    a moment in time.
     
    Understanding none of this
    was only the reality of my limited
    time here on Earth,
    I was young and my life benign.
     
    The spaces of creation are
    defined by mystery where these occurrences
    I learned can be scripted for further reflection
    where the examined life finds it’s truth.
     
    Only then did I understand that
    destiny and poetry
    lie beneath the core of time.
     
    Decades have passed. I can
    still hear the Zulu’s voice. Originally I wrote
    to control my destiny, now I write to find it’s path.
     
    Poem
     
    When you are willing to die
    for something others are dying from,
     
    When you give up your home, work,
    wage, comfort for their suffering,
     
    When you place the lives of others before your own
    knowing full well the consequences of my actions
     
    When the ridicule outweighs the promise of possibility
    or even the success of your crusade
     
    You will then begin to understand just why
    I am willing to run across America.
     
    Image result for 420

    (CNN)There is really just one salient question when it comes to today's decision by the Drug Enforcement Administration to expand the number of growers of research-grade marijuana, while still not changing the scheduling of marijuana: Will this decision make it significantly easier for scientists to study the medical benefits of marijuana?

     
    The answer sadly is: unlikely. And this is a missed opportunity that could further delay potential therapies to countless people.
    Up until today, the University of Mississippi has been the only federally approved source of research-grade medical marijuana in the United States. In a bit of seemingly positive news today, the DEA also announced it will now allow other places to apply for permission to do the same. The hope is that marijuana available for scientific study could grow in both amount and diversity.
     
    While this will be hailed as a victory for research, it will largely be symbolic, because no matter how much marijuana is available, if access is still difficult, it hardly matters.
    Imagine a product that is in high demand but kept behind a locked door. In response to the demand for the product, someone makes a baffling decision to make more of it but still never unlocks the door.
    Marijuana is that product, and its Schedule I designation is that locked door.
    That is the predicament of medical marijuana.
    Because marijuana is a Schedule I substance (meaning that by definition it has "no currently accepted medical use and a high potential for abuse"), there are significant hurdles to getting the door unlocked.
    Potential researchers typically go to the DEA first, as it grants the license to begin scientific research. Even if a license is granted, to study a Schedule I substance, institutions must have heavy-duty safes and high-grade security systems installed, which can be expensive. There is also the more subjective consideration of getting approval from your academic institution to do the research on a Schedule I status substance in the first place. Even if individual faculty members want to do that research, the university leadership may not want the hassle or the potential fallout of bad press. This happened at the University of Arizona when Dr. Sue Sisley was let go after trying to pursue a medical marijuana trial.
    Sisley eventually had to find private funding for her project, and just in April, seven years after the study was initially proposed, hers became the first DEA approved medical marijuana trial for post-traumatic stress in veterans.
    Then, after years of those bureaucratic hurdles, it is the National Institute on Drug Abuse that has held the final key to the lock. Today, it is the biggest federal public funder of marijuana research and has been the sole supplier of the marijuana itself. Even if more medical marijuana will now be freed up for research, the institute will still have to approve any studies it funds.
    The problem, however, is that last word in NIDA's name: "abuse."
     
    According to Dr. Donald Abrams at the University of San Francisco, whom I interviewed for my documentary "Weed," the institute has a primary mandate to study substances for potential abuse rather than as a medicine. Abrams makes an important point. Even if a study does cross all the hurdles described above, the door may stay locked if the intent is to study the benefits of medical marijuana as opposed to the harm.
    Consider this: A quick (and admittedly non-scientific) search through the U.S. National Library of Medicine pulled up 1,434 papers on medical marijuana over the past five years. That same search revealed only 57 papers on medical marijuana benefits. The vast majority were research into the harm of marijuana, such as "Bad trip due to anticholinergic effect of cannabis," "Cannabis induced pancreatitits" and "Marijuana use and risk of lung cancer." That imbalance paints a highly distorted picture of the harm-benefit ratio.

    Contradictory policy

    The road to medical marijuana research is paved with surprises and hypocrisy nearly everywhere you look.
    While the DEA continues to dig in on Schedule I status, deeming no medical benefit, the U.S. Department of Health and Human Services simultaneously holds a patent on cannabinoids for a wide range of medicinal purposes.
    The DEA continues to place marijuana alongside heroin and LSD as drugs with high abuse potential even though the DEA's own former chief administrative law judge, Francis Young, disagreed with this.
    This is one of many quotes from his 1988 petition (PDF) to unschedule marijuana.
    "In strict medical terms marijuana is far safer than many foods we commonly consume. For example, eating 10 raw potatoes can result in a toxic response. By comparison, it is physically impossible to eat enough marijuana to induce death. Marijuana in its natural form is one of the safest therapeutically active substances known to man. By any measure of rational analysis marijuana can be safely used within the supervised routine of medical care."
    Again, that was from a judge with the DEA itself. And yet nearly 30 years later, little has changed.
    Join the conversation

    See the latest news and share your comments with CNN Health on Facebook and Twitter.

    Whether we realize it or not, we all accept a certain amount of hypocrisy in our daily lives. Maybe we don't always have the energy to call it out or we are too speechless and dumbfounded that no one else seems to have noticed.
    With regard to the hypocrisy of federal medical marijuana policy, however, it is worth summoning the stamina to relentlessly present the facts. The lives of patients -- such as that of Charlotte Figi, whose seizures abated with the use of medical marijuana, and so many others -- depend on it.
    That a plant could provide so much benefit and still remain behind these locked doors is worth speaking up about.

    Highlights from the Hill

    August 2016

    In this Issue

    • DEA Won’t Reschedule Cannabis to Improve Access for Research
    • Amtrak Settles Epilepsy Discrimination Case

    DEA Won’t Reschedule Cannabis to Improve Access for Research

    On Thursday, August 11, 2016 the Drug Enforcement Agency (DEA) announced it would not reschedule cannabis, but would expand the number of sites that can grow cannabis for research. We are disappointed with the announcement because removing cannabis from Schedule I in the Controlled Substances Act would paved the way for new treatments as well as much needed information that can help families make informed choices about medical cannabis.

    We are encouraged that the DEA is considering expanding the number of sites that can grow cannabis for research and will closely monitor the implementation of the proposed expansion. Expansion criteria should not be so burdensome and it does not lead to meaningful expansion of growing sites. Currently it is difficult for scientists and researchers to laboratory-based research studies to better understand how cannabinoid compounds might be working in the brain and to organize clinical trials involving cannabis because it is a Schedule I substance and only the National Institute for Drug Abuse (NIDA) can cultivate cannabis for medical research.

    While the DEA acknowledged some promise for CBD for epilepsy and seizures, they looked at a limited number of studies -- none in epilepsy or children, and none published since 2013. Recent studies and preliminary findings from clinical trials involving cannabis have shown minimal side effects or abuse potential for CBD when used to treat uncontrolled seizures.

    The Epilepsy Foundation will continue to advocate for removing federal barriers to cannabis research and policies that promote innovation for the nearly one million people living with uncontrolled seizures. You can our press release on the DEA announcement at www.epilepsy.com/cannabis.  


    Amtrak Settles Epilepsy Discrimination Case

    The National Railroad Passenger Association, better known as Amtrak, recently settled a disability discrimination lawsuit involving a job applicant with epilepsy. The lawsuit, filed by the Equal Employment Opportunity Commission (EEOC), involved Shawn Moe. 

    In April 2013, Moe applied for a job as a Machinist Journeyman at Amtrak’s mechanical yard in Seattle, Washington.  Amtrak provided a conditional offer of employment, but withdrew the offer after Moe reported a history of epilepsy during a post-offer medical examination.  Amtrak cited safety concerns as its justification for withdrawing the offer.  However, Amtrak failed to consider that Moe had been seizure free with medication for years and that Moe received clearance from his neurologist, who assessed that he could perform all the duties of the job, including work on machinery and heights.

    EEOC filed the lawsuit in August 2015 after attempts to reach a pre-litigation settlement failed. The lawsuit was recently settled through a consent decree, which awards Moe with $112,000 in compensatory damages and lost wages.  Amtrak also agreed to implement a modified ADA policy and train its staff on hiring and assessing for reasonable accommodations. This case is a major victory for job applicants and employees with epilepsy. 

    EEOC’s press release about the settlement can be viewed here.

    Earlier news

    Congressional Appropriations Bills Suggest Funding for CDC and NIH

    On July 14, the House Appropriations Committee approved the fiscal year 2017 Labor, Health and Human Services (LHHS) Appropriations bill, which would provide an increase in several critical research initiatives. We are encouraged that the committee included $33.3 billion for the National Institutes of Health (NIH), $1.25 billion above the fiscal year 2016 enacted level and $2.25 billion above the President’s discretionary budget request. Furthermore, the Brain Research through Application of Innovative Neurotechnologies (BRAIN) Initiative would be funded at $195 million, an increase of $45 million from the previous year.

    On June 7, the Senate Committee on Appropriations, Labor, Health and Human Services, Education, and Related Agencies Subcommittee passed their fiscal year 2017 Labor, HHS & Education Appropriations bill, which includes an increase in funding for epilepsy programs at the Centers for Disease Control and Prevention (CDC).

    The appropriations bills must be passed by the full House and Senate, respectively, before they can go to conference for Senators and Representatives to compromise on language. The Epilepsy Foundation strongly supports federal funding for epilepsy research and programs, and we will continue to monitor the appropriations process for fiscal year 2017.


    Epilepsy Foundation Urges Congress to Support CARERS Act

    On July 12, the Epilepsy Foundation joined several other patient organizations in a group letter led by Americans for Safe Access (ASA) to Senators Grassley (IA) and Leahy (VT) and Representatives Pitts (PA) and Green (TX), urging them to bring the Compassionate Access, Research Expansion, and Respect States (CARERS) Act for a committee vote in the Senate Judiciary Committee and the House Energy and Commerce, Health Subcommittee.

    The Epilepsy Foundation strongly supports federal cannabis legislation that would lift federal barriers to cannabis research and create safe, legal access to medical cannabis in the states, including the CARERS Act.

    You can view the letter and urge your members of Congress to support the CARERS Act at www.epilepsy.com/cannabis.

    On June 21, Beatriz Duque Long, senior director government relations at the Epilepsy Foundation, spoke at a briefing where she explained the Foundation’s support of the CARERS Act. Senators Cory Booker (NJ) and Kirsten Gillibrand (NY) also spoke on the importance of passing the CARERS Act and removing federal barriers to research while protecting individuals in states with medical cannabis programs.


    Senators and Patient Groups Oppose Changes to Six Protected Classes

    Senators Grassley (IA) and Brown (OH) wrote a letter to the Centers for Medicare and Medicaid Services (CMS) opposing the recent recommendations from the Medicare Payment Advisory Commission (MedPAC) which would weaken the six protected classes. Bloomberg News recently highlighted the letter and the dangers of weakening the six protected classes, and featured a quote from Angela Ostrom, our chief legal officer and vice president public policy, reiterating our strong opposition to MedPAC’s recommendations. You can read the article at http://bit.ly/BNACMS.

    Legislation Would Weaken Americans with Disabilities Act

    H.R. 3765, the ADA Education and Reform Act of 2015, recently passed out of the House Judiciary Committee and now makes its way to the full House. This legislation would eliminate the responsibility of businesses to know their obligations under the Americans with Disabilities Act (ADA) and place the burden of ensuring that businesses remain accessible on people with disabilities. The Epilepsy Foundation strongly opposes this legislation and will continue to monitor the bill as it moved forward.

August 15, 2016

  • August 7th thru August 15th

    Hello DestinyMaker’s,
     
    Today’s effort…..
     
    Running 10 miles
    Cycling 0 miles
     
    January Totals
     
    Running 93 miles
    Cycling   372  miles
     
    February Totals
     
    Running  122
    Cycling 405
     
    March Totals
     
    Running  76
    Cycling 295
     
    April Totals
     
    Running 92
    Cycling 281
     
    May Totals
     
    Running 141
    Cycling  553
     
    June Totals
     
    Running 164
    Cycling 370

     
    July Totals
     
    Running  205
    Cycling  363
     
    August Totals
     
    Running 140
    Cycling  50
     
    Avg per Day
     
    Running  4.51miles
    Cycling   11.81 miles
     
    Avg per Month 
     
    Running  114.66 miles
    Cycling    379.33 miles
     
    Year to date…
     
    Running 1032.63 miles
    Cycling  2697.31 miles
     
     “These are my expressions placed on a wrinkled sleeve. I have tried to iron out the freckled nuisances of trepidation. Walking on egg shells, sinking in quick sand, drowning in the abyss. I am a reflection of the mistakes I’ve made and the regrets I have. Maybe in a way personal failure allows for tolerance of another, acceptance of the polar opposite. It’s why to the not bitter but better end I will go. I know I am different but all I want to do is make a difference”.
     
    Some run for a reason, someone near and dear. Others run for a cause a condition afflicted to a love one. I am running for a purpose. Few have said I have been running my whole life. Well, truth be told today I am finally running for something, I am running for you. Epilepsy arrives unannounced. It does not knock at the door politely. It knocks the door down literally shaking both it’s foundation and family. Long before my advocacy there was helplessness. Long before I met many of you I was alone. Since I am unable to lessen anyone’s situation, nor bring back who has been lost to Sudep what I can do is go the extra mile.
     
    Here is the upcoming schedule of events planned….. Running Across America Date TBD
     
    Previous events…..
    2017 Running Across America
    2016 This fall training begins
    2015 Rested!
    2014 Injured, recovery, surgery!
    2013 Miami to Tallahassee 532 mile bike ride
    2013 62 mile Run
    2013 48 Marathons in 48 days
    2012 Key Largo to Key West 100 mile run
    2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run
    2011 Miami to Venice Beach 8500 miles (the long way) bike
    2010 Miami to Anchorage 6700 miles bike
    2009 New Years 24 hours 301 miles bike
    2009 Valentine 50 mile run
    2009 Miami to Canada and back. 6500 miles bike
    2008 Denver to Miami 8100 miles bike (the long way)
    2007 Anchorage to Miami 6200 miles bike
    2006 Seattle to Miami 4038 miles bike
    Weather for North Miami Beach, Florida
    Today
    ISOLATED_THUNDERSTORMS
    88° 79°
    Tue
    SCATTERED_THUNDERSTORMS
    88° 79°
    Wed
    SCATTERED_THUNDERSTORMS
    88° 79°
    Thu
    SCATTERED_THUNDERSTORMS
    87° 79°
    If nothing else I am as determined as I am stubborn to give up!
     
    DestinyMaker Strength
    48 marathons in 48 days
    completed 100 mile run
     
    The mind of a poet
    The heart of lion
    A soul from the sea
    Eyes from the sky....

    It's time to stop dreaming and begin pursuing!

    Want to be void of any criticism then....

    Do nothing, Be nothing!

    Welcome back my friends to the show that never ends......

    Plans are being drawn up. Sponsors coming on board. Yep 2017 I am back bigger and more determined then ever before!

    Glenn Fenster's photo.

     

    This is the current actual route. I will finish on the Capital steps of the Capital Building in Washington DC.
     
    Currently my heart is bigger then my ability and my mind is stronger then the body.
    I do not fear where others have doubt. Another mile closer to the starting line!
     
    Every mile I have ever gone, and every mile I run before next June I am one mile closer to the starting line.
    Each mile thereafter I will be one mile closer to the finish line!
     

    2017 Run Across America

    What's the plan.

    Essential to any effort is a plan. By bike I could ooze out every ounce of naivety packing 35 pounds and going 100 miles. Heck to be honest leaving Anchorage, Alaska I was a little scared. After one day a lot more. Running I must be supplied differently. Maximize each mile efficiently.

    The most important part to any successful attempt to run across America is a vehicle following. 2nd to that and just as important are drivers. 3rd to that would be all supplies inside vehicle. More on this later as others are in position to help and I am awaiting word.

    My plan on running.

    Immediately at a disadvantage heading east from the coast and crossing California it is my hope to go 32 miles a day. If I avg 4.5 miles per hour and run 7 hours divided into 3.5 splits. In other words take it slow. I will build on the miles when the terrain allows. Consume 1000 calories or more while running.

    If all the above materializes all that is left is keeping one foot in front of the other one step at a time.

    I will take it even farther.

    What is a day in the life like?

    Important as the logistical plan on running is a day to day itinerary.

    What happens when I finish in the middle of no where?

    This is really easy to answer. Vehicle backtracks to previous area where team stayed. If forward is closer then back we go to next town/camp site. Either way team starts each day from previous day's ending point.

    After loading up on calories and weather depending always out by 8am. In areas of no man's an earlier start is possible.

    The team really is Maribel and unnamed drivers. Will be incredible for us to be together. That is plan A. Plan B only drivers and I. Maribel could take photos, video, sketch. Help in so many ways in recovery, motivation.

    Running, is well running. That part I will be prepared for.

    Poem
     
    There I sat
    being informed by a distant Zulu
    that words were a way of examining
    a moment in time.
     
    Understanding none of this
    was only the reality of my limited
    time here on Earth,
    I was young and my life benign.
     
    The spaces of creation are
    defined by mystery where these occurrences
    I learned can be scripted for further reflection
    where the examined life finds it’s truth.
     
    Only then did I understand that
    destiny and poetry
    lie beneath the core of time.
     
    Decades have passed. I can
    still hear the Zulu’s voice. Originally I wrote
    to control my destiny, now I write to find it’s path.
     
    Poem
     
    When you are willing to die
    for something others are dying from,
     
    When you give up your home, work,
    wage, comfort for their suffering,
     
    When you place the lives of others before your own
    knowing full well the consequences of my actions
     
    When the ridicule outweighs the promise of possibility
    or even the success of your crusade
     
    You will then begin to understand just why
    I am willing to run across America.
    Image result for 420

    (CNN)There is really just one salient question when it comes to today's decision by the Drug Enforcement Administration to expand the number of growers of research-grade marijuana, while still not changing the scheduling of marijuana: Will this decision make it significantly easier for scientists to study the medical benefits of marijuana?

     
    The answer sadly is: unlikely. And this is a missed opportunity that could further delay potential therapies to countless people.
    Up until today, the University of Mississippi has been the only federally approved source of research-grade medical marijuana in the United States. In a bit of seemingly positive news today, the DEA also announced it will now allow other places to apply for permission to do the same. The hope is that marijuana available for scientific study could grow in both amount and diversity.
     
    While this will be hailed as a victory for research, it will largely be symbolic, because no matter how much marijuana is available, if access is still difficult, it hardly matters.
    Imagine a product that is in high demand but kept behind a locked door. In response to the demand for the product, someone makes a baffling decision to make more of it but still never unlocks the door.
    Marijuana is that product, and its Schedule I designation is that locked door.
    That is the predicament of medical marijuana.
    Because marijuana is a Schedule I substance (meaning that by definition it has "no currently accepted medical use and a high potential for abuse"), there are significant hurdles to getting the door unlocked.
    Potential researchers typically go to the DEA first, as it grants the license to begin scientific research. Even if a license is granted, to study a Schedule I substance, institutions must have heavy-duty safes and high-grade security systems installed, which can be expensive. There is also the more subjective consideration of getting approval from your academic institution to do the research on a Schedule I status substance in the first place. Even if individual faculty members want to do that research, the university leadership may not want the hassle or the potential fallout of bad press. This happened at the University of Arizona when Dr. Sue Sisley was let go after trying to pursue a medical marijuana trial.
    Sisley eventually had to find private funding for her project, and just in April, seven years after the study was initially proposed, hers became the first DEA approved medical marijuana trial for post-traumatic stress in veterans.
    Then, after years of those bureaucratic hurdles, it is the National Institute on Drug Abuse that has held the final key to the lock. Today, it is the biggest federal public funder of marijuana research and has been the sole supplier of the marijuana itself. Even if more medical marijuana will now be freed up for research, the institute will still have to approve any studies it funds.
    The problem, however, is that last word in NIDA's name: "abuse."
     
    According to Dr. Donald Abrams at the University of San Francisco, whom I interviewed for my documentary "Weed," the institute has a primary mandate to study substances for potential abuse rather than as a medicine. Abrams makes an important point. Even if a study does cross all the hurdles described above, the door may stay locked if the intent is to study the benefits of medical marijuana as opposed to the harm.
    Consider this: A quick (and admittedly non-scientific) search through the U.S. National Library of Medicine pulled up 1,434 papers on medical marijuana over the past five years. That same search revealed only 57 papers on medical marijuana benefits. The vast majority were research into the harm of marijuana, such as "Bad trip due to anticholinergic effect of cannabis," "Cannabis induced pancreatitits" and "Marijuana use and risk of lung cancer." That imbalance paints a highly distorted picture of the harm-benefit ratio.

    Contradictory policy

    The road to medical marijuana research is paved with surprises and hypocrisy nearly everywhere you look.
    While the DEA continues to dig in on Schedule I status, deeming no medical benefit, the U.S. Department of Health and Human Services simultaneously holds a patent on cannabinoids for a wide range of medicinal purposes.
    The DEA continues to place marijuana alongside heroin and LSD as drugs with high abuse potential even though the DEA's own former chief administrative law judge, Francis Young, disagreed with this.
    This is one of many quotes from his 1988 petition (PDF) to unschedule marijuana.
    "In strict medical terms marijuana is far safer than many foods we commonly consume. For example, eating 10 raw potatoes can result in a toxic response. By comparison, it is physically impossible to eat enough marijuana to induce death. Marijuana in its natural form is one of the safest therapeutically active substances known to man. By any measure of rational analysis marijuana can be safely used within the supervised routine of medical care."
    Again, that was from a judge with the DEA itself. And yet nearly 30 years later, little has changed.
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    Whether we realize it or not, we all accept a certain amount of hypocrisy in our daily lives. Maybe we don't always have the energy to call it out or we are too speechless and dumbfounded that no one else seems to have noticed.
    With regard to the hypocrisy of federal medical marijuana policy, however, it is worth summoning the stamina to relentlessly present the facts. The lives of patients -- such as that of Charlotte Figi, whose seizures abated with the use of medical marijuana, and so many others -- depend on it.
    That a plant could provide so much benefit and still remain behind these locked doors is worth speaking up about.

    Highlights from the Hill

    Congressional Appropriations Bills Suggest Funding for CDC and NIH

    On July 14, the House Appropriations Committee approved the fiscal year 2017 Labor, Health and Human Services (LHHS) Appropriations bill, which would provide an increase in several critical research initiatives. We are encouraged that the committee included $33.3 billion for the National Institutes of Health (NIH), $1.25 billion above the fiscal year 2016 enacted level and $2.25 billion above the President’s discretionary budget request. Furthermore, the Brain Research through Application of Innovative Neurotechnologies (BRAIN) Initiative would be funded at $195 million, an increase of $45 million from the previous year.

    On June 7, the Senate Committee on Appropriations, Labor, Health and Human Services, Education, and Related Agencies Subcommittee passed their fiscal year 2017 Labor, HHS & Education Appropriations bill, which includes an increase in funding for epilepsy programs at the Centers for Disease Control and Prevention (CDC).

    The appropriations bills must be passed by the full House and Senate, respectively, before they can go to conference for Senators and Representatives to compromise on language. The Epilepsy Foundation strongly supports federal funding for epilepsy research and programs, and we will continue to monitor the appropriations process for fiscal year 2017.


    Epilepsy Foundation Urges Congress to Support CARERS Act

    On July 12, the Epilepsy Foundation joined several other patient organizations in a group letter led by Americans for Safe Access (ASA) to Senators Grassley (IA) and Leahy (VT) and Representatives Pitts (PA) and Green (TX), urging them to bring the Compassionate Access, Research Expansion, and Respect States (CARERS) Act for a committee vote in the Senate Judiciary Committee and the House Energy and Commerce, Health Subcommittee.

    The Epilepsy Foundation strongly supports federal cannabis legislation that would lift federal barriers to cannabis research and create safe, legal access to medical cannabis in the states, including the CARERS Act.

    You can view the letter and urge your members of Congress to support the CARERS Act at www.epilepsy.com/cannabis.

    On June 21, Beatriz Duque Long, senior director government relations at the Epilepsy Foundation, spoke at a briefing where she explained the Foundation’s support of the CARERS Act. Senators Cory Booker (NJ) and Kirsten Gillibrand (NY) also spoke on the importance of passing the CARERS Act and removing federal barriers to research while protecting individuals in states with medical cannabis programs.


    Senators and Patient Groups Oppose Changes to Six Protected Classes

    Senators Grassley (IA) and Brown (OH) wrote a letter to the Centers for Medicare and Medicaid Services (CMS) opposing the recent recommendations from the Medicare Payment Advisory Commission (MedPAC) which would weaken the six protected classes. Bloomberg News recently highlighted the letter and the dangers of weakening the six protected classes, and featured a quote from Angela Ostrom, our chief legal officer and vice president public policy, reiterating our strong opposition to MedPAC’s recommendations. You can read the article at http://bit.ly/BNACMS.

    Legislation Would Weaken Americans with Disabilities Act

    H.R. 3765, the ADA Education and Reform Act of 2015, recently passed out of the House Judiciary Committee and now makes its way to the full House. This legislation would eliminate the responsibility of businesses to know their obligations under the Americans with Disabilities Act (ADA) and place the burden of ensuring that businesses remain accessible on people with disabilities. The Epilepsy Foundation strongly opposes this legislation and will continue to monitor the bill as it moved forward.