Archived Outdoors

Runner aims to raise money to help people with rare disease

Part-time Sylva resident Richie Kahn is running the Catamount Climb at Western Carolina University April 9 to raise money for One Rare, a nonprofit that works to improve the lives of young adults living with rare conditions. 

Kahn, who is embedded to the local running scene in Durham, suffers from a rare disease called Wolfram-like syndrome and is rapidly losing his vision. 

“Anyone who knows me can attest to the fact that running is a big part of my life,” Kahn wrote on his GoFundMe page. “Since 2009, running has been how I decompress, stay active and make friends. From co-organizing Bull City Beer Runners to logging neighborhood miles, running is sort of my thing. And, despite all of the vision I’ve lost over the last few years due to a rare and progressive form of optic atrophy called Wolfram-like syndrome, I’m not going to let it stop me.”

Since he first ran it in 2012, the Catamount Climb Half Marathon has been his favorite race, and this year he’ll run it with his wife Nina serving as his running guide. 

One Rare was founded in 2019 by a mother and her adult son, living with Duchene muscular dystrophy, to provide resources and opportunities to improve the lives and futures of young adults, aged 18-35 living with rare disease, through education, mentoring, recreation and peer support. While there are many supportive programs for families and children, teens and young adults, who are now living longer lives through innovations in therapeutics and healthcare, often age out of programs when they need them the most. One Rare aims to fill that gap. 

Learn more about Kahn’s run or contribute to the GoFundMe at gofundme.com/f/gz8rup-running-blind.

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1 comment

  • Exceptional article, exceptional man, exceptional cause!

    posted by Luciano Baltierra

    Saturday, 04/09/2022

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