Welcome and Thank You for supporting my 2015 Boston Marathon Fundraising Campaign, in partnership with the National Organization for Rare Disorders (NORD) and the Genzyme Running for Rare DieseasesTeam.
I am honored and thrilled to be a part of this powerful community, together impacting the lives of so many individuals and families, engaging with a patient partner, and training for the Boston Marathon. I am fully committed and inspired. With your support and encouragement I believe that I can reach this goal.
Update 25FEB2015 - The Importance of Rare Disease Education, Op-Ed piece published on Medscape by a medical student inspired by the rare disease community. Please read and share this insightful article.
The Charitable Contribution: Genzyme's 2015 Boston Marathon team is fundraising for the Genzyme/NORD NIH Undiagnosed Disease Program (UDP). Established in 2008, the NIH UDP is the primary national resource for patients and their physicians who have exhausted other alternatives in seeking a diagnosis. The Genzyme/NORD NIH fund that we are raising money for will pay for the medical testing for individuals who cannot afford the basic medical work up needed to make them eligible for the NIH UDP. Many insurance companies do not cover the testing needed to get into the NIH UDP - that is where our fund comes in. The availability of our funds to help pay for medical bills, transportation to and from doctor offices, and support for family members such as the parents and spouses of the patients is so critical to giving these people hope in finding a diagnosis and then being able to find a treatment for their rare medical conditions. (All donations are tax deductible to the extent permitted by law)
The Patient Partner and Awareness: This year I will be paired with a patient partner who is diagnosed and living with Cushing Syndrome. Together we are inspired to help spread awareness for the need for rare disease education both in the medical community and also within our society. Utilizing social media and blogs as well as NORD resources, we hope to help spread awareness during marathon season and beyond.
The Team: To learn more, Please check out the Running for Rare Diseases site and blog... It will provide you with a whole new perspective on the human experiences that we all share - patients, runners, family members.
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." - Margaret Mead