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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.
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.
Grab your shoes and spin CRANK Style NYC!
When: Saturday, September 27, 2014
Where: 1658 3rd Avenue New York, NY 10128 (between 92nd & 93rd Street Upper East Side)
Time: 1:00 – 3:00 pm
Join us November 15, 2014 in Ft. Lauderdale for an Havana Nights Fundraiser to raise money and awareness to fund research for CMT Type 6.
I was diagnosed with CMT type 1a in August of 2010. I was relieved to put a name to symptoms I’ve had my whole life.
Five-year-old Aiden Kelly was diagnosed with Charcot-Marie-Tooth Disease (CMT) last April, but for the Wellesley boy, the impact of this rare disease has only revealed itself gradually.
HNF is thrilled to have been chosen for the 4rd year as a Charity Partner for the TD Bank Five Boro Bike Tour
Boasting a growing membership, Team CMT and the Hereditary Neuropathy Foundation (HNF) are celebrating a successful first year of collaboration.
These days, inspired by his love of family he runs on behalf of three generations of women with Charcot-Marie-Tooth disease
While running the Philly Half-Marathon, Joe will be raising funds for the Hereditary Neuropathy Foundation (HNF). So far, he has raised $ 1105.00 through private donations and hopes to gain corporate sponsors as well.
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