I have finally taken the plunge and will be doing something I’ve wanted to do for while now. I have joined the NORD Running for Rare Diseases team. For the past eight years the NORD running team has been running on behalf of our patient partners in the rare diseases communities. This year, the team has expanded beyond the Boston Marathon to include other races and I will be running my first half-marathon on May 3rd Providence Rode Island- the longest distance I will have ever run! You can learn more about the team at http://runningforrarediseases.org.
I am proud to be running on behalf of the Langerhans Cell Histiocytosis community and my Patient Partner Heather.
This year, the money raised by the team will be used to help fund the Genzyme/NORD NIH Undiagnosed Diseases Program (UDP) Partnership. This partnership was established to help those patients still undiagnosed and searching for a diagnosis. 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 path to diagnosis is often long and frustrating. For our patients with rare diseases, it is often lonely too. With so few individuals in the world sharing the same symptoms and challenges there may be seem to be little hope of finding a diagnosis on their own. In addition, the medical testes needed to find a diagnosis can also be cost prohibitive. The Genzyme/NORD NIH Undiagnosed Diseases Fund will help support and pay for the medical testing for individuals who are seeking a diagnosis but cannot afford the medical testing needed. A diagnosis is the first step, and for many of our patients and their families, the first ray of hope in their journey.
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Join the “Running for Rare Diseases” community by subscribing to our blog, liking us on Facebook, following us on Twitter, and watching/sharing our Boston Marathon and Rare Disease Day Relay videos. You can also learn more about NORD at https://www.rarediseases.org
Mahalo for your support!!