Dearest Friends, Family & Colleagues,
I feel privileged, honoured and humbled to again be a part of the Running for Rare Diseases team. In 2015, the team has been expanded to run other races in addition to the Boston marathon and on 3rd May, 2015, I will run the Providence, RI, marathon 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 often children) 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.
Donations will specifically benefit a fund created to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to theNational 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.
This year I have been partnered with a very special boy named Ben who is almost 3 years old. Ben has bilateral congenital cataracts, microthalmia and micro cornea. Despite being visually impaired, Ben is an amazingly energetic, affectionate and articulate young boy. He loves to bounce, run and swim and his favorite color is purple.
I have personally committed to raise a minimum of $2000 (but would love to raise more) as a part of the Team in support of NORD. The Team will be holding several fundraising events throughout the winter. You can read about these events and information from year’s past at: http://running4rare.org/.
To learn more about the team and our mission, follow our blog, like us on Facebook, and follow us on Twitter or watch/share our Boston Marathon and Rare Disease Day Relay videos.
My sincerest thanks for your support. Even the smallest amount counts. Please feel free to forward this to anyone who you think might be interested in also donating.