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.

TCS New York City Marathon - November 1, 2026

NameDisease(s)Community PartnerLearn More
Abigail MaderiaPompe DiseaseShayleeSupport Abigail
Amanda BernsteinPseudomyxoma Peritonei (PMP), a rare cancerAmanda’s DadSupport Amanda
Amanda PahlEDS / intestinal failureLily E.Support Amanda
Austin DoddThanatophoric DysplasiaLucaSupport Austin
Benjamin KanyLynch SyndromeLoriSupport Benjamin
Bridget JoyceRothman Thomson SyndromeShaunaSupport Bridget
Brittney ThompsonMorqious Syndrome RobertSupport Brittney
Janaiah McClureFamilial Adenomatous PolyposisChrisSupport Janaiah
Jason RiddellAcid sphingomyelinase deficiency (ASMD) Jason’s SonSupport Jason
Jax GardnerCorticobasal Ganglionic Degeneration (CBGD)SarahSupport Jax
Joseph SchmidtDyskeratosis congenitaGenevieveSupport Joseph
Julia MaderiaEhlers Danlos Syndrome (EDS)JillianSupport Julia
Kaitlyn SmolichCLN1 disease CharlieSupport Kaitlyn
Kellie Jones-BowlesPhenylketonuria (PKU)TheoSupport Kellie
Kerry ComiskeySupport Kerry
Lauren ParnellComplex Regional Pain Syndrome (CRPS)ElainaSupport Lauren
Maeve BrinEhlers Danlos Syndrome (EDS)KristenSupport Maeve
Mimi NovakComplex Regional Pain Syndrome (CRPS), DystoniaKeatingSupport Mimi
Natalia PortkyoHao-Fountain SyndromeLiraSupport Natalia
Pamela PriceBehçet's diseaseKassieSupport Pamela
Sam KlingenbergMenkes DiseaseEvanSupport Sam
Sophie ManningLymphangioleiomyomatosisJennSupport Sophie
Teigen ChristiansenGlycogen Storage Disease Type IaJulietaSupport Teigen
Victoria FerdinandiImmune Thrombocytopenia (ITP)DouglasSupport Victoria

Boston Marathon - April 20, 2026

NameDisease(s)Community PartnerLearn More
Alecia FifeArthrogryposis Multiplex Congenita, PNHGrandson Anthony and AmandaSupport Alecia
Annie SedoricAcromegaly, Lynch SyndromeLoriSupport Annie
Beck MillerHolt Oram SyndromeSon Cannon and NakishaSupport Beck
Calley ForbesFactorX11 Deficiency, Pompe Disease Mom and ShayleeSupport Calley
Eric RogersCHD2 epileptic encephalopathy, Dystonia, Chiari MalformationJaime, Jess and JulesSupport Eric
Howard HernandezRothman- Thomson SyndromeShaunaSupport Howard
Kate KellyPKU Her sons and TheoSupport Kate
Paul CotnamMPS1- Hurler SyndromeKyleSupport Paul

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