Thank you for visiting my fundraising page!
I have the honor of running the Boston Marathon on April 20, 2015 as a member of the Genzyme Running for Rare Diseases Marathon Team. This is an incredible group of runners and patient partners that come together over the course of the training season to raise awareness and funds for rare diseases. Some of these partnerships go beyond just the marathon and have developed into real friendships. I am extremely grateful and lucky to be a part of this and so can you!
I am running to raise money for the National Organization for Rare Disorders (NORD). NORD is a federally registered not-for-profit organization (TAX ID 13-3223946) in the United States that advocated for enactment of the Orphan Drug Act of 1983. They continue to monitor implementation of the law, especially encouraging research and development of new treatments for rare “orphan” diseases. Often, these are diseases so rare that no other source of funding is available. All monies raised will be used to fund the Genzyme/NORD NIH Undiagnosed Diseases Program (UDP) Partnership, which supports individuals who are still undiagnosed. Established in 2008, the NIH UDP is the primary U.S. resource for patients and their physicians who have exhausted other alternatives in seeking a diagnosis.
The Genzyme/NORD NIH Undiagnosed Diseases Fund will pay for the medical testing for individuals who cannot afford the basic medical tests needed to make them eligible for UDP.
Furthermore, I have been paried with Sienna, my patient partner, who suffers from the rare genetic disease, F.O.P. F.O.P. causes bone to form in muscles and other soft tissues of the body, eventually causing people to become "human statues". Please learn more about Sienna's story and F.O.P. here.
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Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!
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