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
| Name | Disease(s) | Community Partner | Learn More | |
| Paul Cotnam | MPS1- Hurler Syndrome | Kyle | Learn More |
| Alecia Fife | Arthrogryposis Multiplex Congenita, PNH | Grandson Anthony and Amanda | Learn More |
| Calley Forbes | FactorX11 Defiency, Pompe Disease | Mom and Shaylee | Learn More |
| Howard Hernandez | Rothman- Thomson Syndrome | Shauna | Learn More |
| Kate Kelly | PKU | Her sons and Theo | Learn More |
| Beck Miller | Holt Oram Syndrome | Son Cannon and Nakisha | Learn More |
| Eric Rogers | CHD2 epileptic encephalopathy, Dystonia, Chiari Malformation | Jaime, Jess and Jules | Learn More |
| Annie Sedoric | Acromegaly, Lynch Syndrome | Lori | Learn More |