BENEFITING: National Organization for Rare Disorders, Inc.
EVENT: 2016 Boston Marathon
I am so honored and excited to be running in the 2016 Boston Marathon to raise money for the National Organization for Rare Disorders (NORD). My patient partner this year is Sarah, who is a strong voice for the fibromuscular dysplasia community. As we’ve gotten to know each other, I’ve been inspired by her strength, resilience, and positive attitude. To learn more about FMD, you can read up about it here (http://rarediseases.org/rare-diseases/fibromuscular-dysplasia) or on http://www.fmdchat.net/
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.