BENEFITING: National Organization for Rare Disorders, Inc.
EVENT: 2017 Boston Marathon
EVENT DATE: Apr 17, 2017
Thank you for visiting my fundraising page!
I have some exciting news to share! I will be participating in the 2017 Boston Marathon in support of the National Organization for Rare Disorders (NORD). This is my second Marathon in support of Rare Diseases awareness. This time I have been asked to represent my Patient Partner with a Rare Disease called Rothmund-Thomson Syndrome. I am honored and privileged to have been given this opportunity. As you know, sympathy alone doesn't lead to a cure. Funding research to find a cure is crucial and with your help I strongly believe we can make a difference in people’s lives!
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. I will do my part to train hard and complete the Marathon and I need your generous support to reach my committed goal of raising $5000.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!