Hello all -
I am privileged and honored to have been selected once again to be a part of the Genzyme Running for Rare Diseases Marathon Team. The 2015 Team has been expanded to include over 100 runners; with runners participating in several races including Boston, Providence and even Paris! I will run the Boston Marathon on April 20, 2015 to raise money for the National Organization for Rare Disorders (NORD), a non-profit organization that advocates and encourages research and development of new treatments for rare diseases.
In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. There are approximately 6,800 such diseases, and while each disease is rare, when considered together they affect nearly 30 million Americans or almost 1 in 10 people. There are certain challenges that all patients and families affected by rare diseases share. Given the rarity of these disorders many patients go undiagnosed for years and are deprived of life saving treatments.
Your donation will specifically benefit a fund created to pay for standard diagnostic testing for people with undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program, but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH Program.
I have personally committed to raise a minimum of $3,500 as a part of the Team in support of NORD. The Team will be holding several fundraising events throughout the year. You can read about these events and learn more about our Team by subscribing to our blog, following us on Twitter: https://twitter.com/running4rare and watching Team videos from year's past at: Boston Marathon and Rare Disease Day Relay .
My sincerest thanks for your support. Even the smallest amount helps. For those who have supported our Team and donated in year's past, thank you again.
See you at the finish line!