Running for Rare Team

Meet NORD’s Running for Rare team, the dedicated runners participating in our upcoming flagship events. Click “Learn More” to dive into each runner’s full profile and discover their personal motivations and stories. By doing so, you’ll have the opportunity to contribute to their fundraising efforts, directly supporting the fight against rare diseases. Join us in empowering these incredible individuals and making a meaningful impact in the rare disease community.

Boston Marathon 2026 - April 21, 2026

NameDisease(s)Community PartnerLearn More
Paul CotnamMPS1- Hurler SyndromeKyleLearn More
Alecia FifeArthrogryposis Multiplex Congenita, PNHGrandson Anthony and AmandaLearn More
Calley ForbesFactorX11 Defiency, Pompe Disease Mom and ShayleeLearn More
Howard HernandezRothman- Thomson SyndromeShaunaLearn More
Kate KellyPKU Her sons and TheoLearn More
Beck MillerHolt Oram SyndromeSon Cannon and NakishaLearn More
Eric RogersCHD2 epileptic encephalopathy, Dystonia, Chiari MalformationJaime, Jess and JulesLearn More
Annie SedoricAcromegaly, Lynch SyndromeLoriLearn More