Thank you for visiting my fundraising home page.
This is my second marathon and this year I am honored to be part of the Running For Rare Diseases Team which is running on behalf of the National Organization for Rare Diseases (NORD). My goal is to raise $6000 to support this wonderful cause.
Sam Buck is my patient partner. Sam is a wonderful, happy, 4 year old boy who was diagnosed with Vanishing White Matter disease. One of the many very rare diseases which unfortunately does not currently have a cure. As a member of the Genzyme Running Team, we are running and partnering with patients diagnosed with rare diseases with a purpose of raising awareness about these diseases, and helping to build a community and raise money to support the diagnosis of rare diseases for other families and patients.
Starting with this year’s Boston Marathon, the money raised by the team will be used to fund the Genzyme/NORD NIH Undiagnosed Diseases Program (UDP) Partnership, which is meant to help 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. Next year, as the UDP expands to include a network of major academic medical centers across the U.S., the Genzyme/NORD NIH Undiagnosed Diseases Fund will support testing primarily for patients applying to these new clinical sites.
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts. Please feel free to forward this to anyone who may wish to contribute to the very worthy cause.
Thank you for your support. A contribution of any amount will help make a difference and is greatly appreciated.