Thank you for visiting my fundraising page!
This year, I will 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. My patient partner, John, has multiple sclerosis (MS), which is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.
We are 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.
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