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

Name	Disease(s)	Community Partner	Learn More
Abigail Maderia	Pompe Disease	Shaylee	Support Abigail
Amanda Bernstein	Pseudomyxoma Peritonei (PMP), a rare cancer	My Dad	Support Amanda
Amanda Pahl	EDS / intestinal failure	Lily E.	Support Amanda
Austin Dodd	Thanatophoric Dysplasia	Luca	Support Austin
Benjamin Kany	Lynch Syndrome	Lori	Support Benjamin
Bridget Joyce	Rothman Thomson Syndrome	Shauna	Support Bridget
Brittney Thompson	Morqious Syndrome	Robert	Support Brittney
Janaiah McClure	FAP	Chris	Support Janaiah
Jax Gardner	Corticobasal Ganglionic Degeneration (CBGD)	Sarah	Support Jax
Joseph Schmidt	Dyskeratosis congenita	Genevieve	Support Joseph
Julia Maderia	EDS	Jillian	Support Julia
Kaitlyn Smolich	CLN1 disease	Charlie	Support Kaitlyn
Kellie Jones- Bowles	PKU	Theo	Support Kellie
Lauren Parnell		Elaina	Support Lauren
Maeve Brin	EDS	K	Support Maeve
Mimi Novak	CRPS, Dystonia	Keating	Support Mimi
Natalia Portkyo	Hao-Fountain Syndrome	Lira	Support Natalia
Pamela Price	Behçet's disease	Kassie	Support Pamela
Sam Klingenberg	Menkes Disease	Evan	Support Sam
Sophie Manning			Support Sophie
Teigen Christiansen	Glycogen Storage Disease Type Ia	Julieta	Support Teigen
Victoria Ferdinandi	ITP	Douglas	Support Victoria

Boston Marathon - April 20, 2026

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