BENEFITING: National Organization for Rare Disorders, Inc.
EVENT: 2016 Boston Marathon
I am honored and humbled to be given the opportunity to run my first Boston Marathon in support of patients with Rare Diseases. My patient partner, Katie (in the picture on the left!), has Prader-Willi Syndrome which is a complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior. (See http://www.pwsausa.org/). Katie is an amazing kid, awesome at jigsaw puzzles and pretty good scorer on the basketball court! Through the NORD Running for Rare team, we are raising funds for the NIH undiagnosed diseases fund to help patients and families like Katie's get an early diagnosis which is so critical for effective disease management (and treatment where available). More details about NORD are below. THANK YOU for considering a donation! Regards, Carolyn
National Organization for Rare Disorders, Inc. wrote -
For the ninth consecutive year, patients and advocates will run as members of the Running for Rare Diseases Marathon Team in support of the National Organization for Rare Disorders (NORD). NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research and financial assistance services.
Rare diseases impact the lives of 30 million Americans – two-thirds of whom are children. On average, it can take a patient 5-7 years to receive an accurate diagnosis, at which time 95% will be told there is no FDA approved treatment or ongoing research to learn more about their disease. The funds raised from the Running for Rare Diseases Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH).
Donations in support of this campaign will be tax-deductible to the extent permitted by law. For eight consecutive years, NORD has received the top (4-Star) rating from Charity Navigator, a leading independent evaluator of charities.