Running for patients living with a rare disease
Friends and Family,
This year for the first time, I will be taking on the challenge to run the Paris Marathon on Sunday April 12, 2015. 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.
It is both a privilege and honor to be a member of the Running for Rare Diseases Board and running as part of the team. This year I will take part in the Paris Marathon for the first time, joined by my patient partner, Emma. Emma and I have already been running together, virtually, for over a year but it will be extra special to get the chance to run the same race, on the same day, and in the same city! Emma shares my love of running and we are both Canadians currently living abroad. Emma lives with Gaucher disease, a rare genetic disorder caused by an enzyme deficiency.
People who have Gaucher disease type 1, experience a wide range of signs and symptoms, including fatigue, bone pain, easy bruising and bleeding, and an enlarged liver and spleen. Gaucher is the most common of the group of diseases called lysosomal storage disorders, yet affects less than 10,000 people globally. To put this into perspective, more than triple this number will be running in this year's Paris Marathon. You can find out more of Emma’s story by watching, “Emma’s Garden: Growing with Gaucher” – http://www.mynormal.ca/p/emmas-story.html.
The Team will also be holding several fundraising events throughout the winter including a torch relay on Rare Disease Day – February 27, 2015 – from Framingham to Waltham to Allston to Cambridge. Learn more about our activities on our blog at: http://runningforrarediseases.org/.
After Paris, other members of the team will be taking part in the Boston and Providence marathons. 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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