Run With Purpose. Give With Heart.

by | Dec 28, 2022 | 0 comments

Run With Purpose. Give With Heart. Support HNF’s 2026 TCS New York City Marathon Team

Every step tells a story. This November, a courageous group of runners will take to the streets of New York City as part of the TCS New York City Marathon — running not just for themselves, but for the millions of people living with Charcot-Marie-Tooth disease (CMT) and other hereditary neuropathies.

Why We Run

CMT is the most common inherited neurological disorder, affecting approximately 1 in 2,500 people worldwide. It causes progressive muscle weakness, loss of sensation, and mobility challenges that impact everyday life. Despite its prevalence, CMT remains largely underfunded and underrecognized and that is exactly why we run.

Your Support Makes a Difference

Every dollar raised through our marathon team goes directly toward funding critical CMT research, advancing new treatments, and providing vital resources to patients and families navigating life with hereditary neuropathy. Together, we are getting closer to a cure.

How You Can Help

Make a donation — No amount is too small. Every contribution brings us one step closer to a world free of CMT

 

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Personal Stories: Triathlete, Trainer with Charcot-Marie-Tooth

Personal Stories: Triathlete, Trainer with Charcot-Marie-Tooth

In spite of high foot arches and trouble with balance, Joy von Werder of Winter Springs, FL has always been a runner and cyclist. She was also eager to participate in a triathlon. “The training and racing aspects really appeal to me,” she explained. There was one huge problem though. Joy didn’t know how to swim. “So there I was, 39 years old, taking swimming lessons from the boy who gave my little kids lessons,” Joy laughs, but her voice changes quickly as she describes her first race.

Member Alyson O’Connor Won’t Let Her CMT Stop Her!

Allyson O’Connor won’t let CMT get her down. She was unofficially diagnosed at the age of 10. Her Dad had the same symptoms, but at the time genetic tests were not available. Her diagnosis was based on an EMG. After having her two children, now age 8 and 6, she decided it was important to determine if she definitely had CMT.

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