September 19, 2016
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September 15th thru September 19th
Hello DestinyMaker’s,Today’s effort…..Running 0 miles
Cycling 0 milesJanuary TotalsRunning 93 miles
Cycling 372 milesFebruary TotalsRunning 122
Cycling 405March TotalsRunning 76Cycling 295April TotalsRunning 92
Cycling 281May TotalsRunning 141Cycling 553June TotalsRunning 164Cycling 370
July TotalsRunning 205Cycling 363August TotalsRunning 315
Cycling 70
September TotalsRunning 153Cycling 142Avg per DayRunning 5.05 miles
Cycling 11.14 miles
Avg per MonthRunning 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 TBDPrevious 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 ride2013 62 mile Run2013 48 Marathons in 48 days2012 Key Largo to Key West 100 mile run2012 (5) 37 mile runs, (4) 50 mile runs (1) 60 mile run2011 Miami to Venice Beach 8500 miles (the long way) bike2010 Miami to Anchorage 6700 miles bike2009 New Years 24 hours 301 miles bike2009 Valentine 50 mile run2009 Miami to Canada and back. 6500 miles bike2008 Denver to Miami 8100 miles bike (the long way)
2007 Anchorage to Miami 6200 miles bike2006 Seattle to Miami 4038 miles bikeWeather for North Miami Beach, FloridaToday
88° 78°Tue87° 78°Wed87° 79°Thu86° 79°If nothing else I am as determined as I am stubborn to give up!
DestinyMaker Strength48 marathons in 48 dayscompleted 100 mile runThe mind of a poetThe heart of lionA soul from the seaEyes 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 EpilepsySupport 'DestinyMaker's Run Across America for Epilepsy' by donating or sharing today!generosity.comThe 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
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.
2 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.comCheck it out....
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.PoemThere I sat
being informed by a distant Zuluthat words were a way of examining
a moment in time.Understanding none of this
was only the reality of my limitedtime here on Earth,
I was young and my life benign.The spaces of creation are
defined by mystery where these occurrencesI learned can be scripted for further reflection
where the examined life finds it’s truth.Only then did I understand that
destiny and poetrylie beneath the core of time.Decades have passed. I canstill hear the Zulu’s voice. Originally I wrote
to control my destiny, now I write to find it’s path.PoemWhen 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 actionsWhen the ridicule outweighs the promise of possibility
or even the success of your crusadeYou will then begin to understand just why
I am willing to run across America.(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.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.
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