We're almost there!!!
March 01, 2016
BENEFITING: National Organization for Rare Disorders, Inc.
EVENT: 2016 Boston Marathon
National Organization for Rare Disorders, Inc. wrote -
Marathon runners and rare disease community members team up to support all 7,000 rare diseases and help undiagnosed patients find answers. The funds raised for NORD will support the NORD NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.
This year, I will be running for Sam Buck, a little boy from CT from the Vanishing White Matter Syndrome Community. You can read about Sam in a post from his mom Allyson at http://running4rare.org/2015/02/05/sam-vs-vwm/ and from last year's running partner at http://running4rare.org/2015/02/08/running-for-sam/