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 - April 15, 2024
Name | Disease(s) | Community Partner | Learn More | |
Angela DeLucco | Cryopyrin-Associated Periodic Syndrome | Kelly | Learn More | |
Kyra Durfee | Amanda | Learn More | ||
Julia Maderia | Ehlers Danlos Syndrome | Lily E. | Learn More | |
Sheena Monetti | Gould Syndrome | Zeeva | Learn More | |
Jaime McHugh | CHD2, Functional Neurological Disorder, Dystonia | Jessica & Julia | Learn More | |
Mark Santos | Hyper mobile EDS, MALS Syndrome, Gastroparesis | Kaily S. | Learn More | |
Victor Sun | Paroxysmal Nocturnal Hemoglobinuria (PNH) | Nicole | Learn More | |
Nihal Tagcu | Pompe Disease | Shaylee | Learn More | |
Marco Testa | Chronic Granulomatous Disease | Steven, Myself | Learn More |