Participate or Host an event
It’s a unique opportunity for our community to come together and celebrate and raise awareness and funds for CMT research. The HNF staff will assist you in your efforts.
Learn about our events and co-host with us in your area!
We can help! The HNF Team will support your event with marketing, invitation designing, planning and more!
Some past events: Spin for a Cure, Poker Night, Set Sail for CMT, Card Party, Golf Outing, Go-kart Party, Cocktail Party, Bake Sale, Clay shoot, Paint Night, Gala & Auction and more.
Upcoming Events
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Past Events
Hot off the press
Some recent papers on Charcot-Marie-Tooth (CMT) disease go to show that we are steadily and impressively peeling back the complexity of the biology even though it is a relatively common rare disease with several thousand publications on it.
Arclight Presents…BERNADETTE (NYR) September 17, 2013
Cast: Bernadette Scarduzio
Bernadette Scarduzio was born with the most common inherited disease that no one has ever heard of: Charcot Marie Tooth (CMT) syndrome. CMT is the number one hereditary neuropathy in the world, affecting 1 in 2,500 people or nearly 2.6 million worldwide.
September is CMT Awareness Month – Help HNF Spread the Word
At HNF we have dedicated our lives to raising awareness about CMT, so we’d like to spend the month sharing what we’ve learned
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases.
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases.
Joseph Torello: HNF Supporter and lives daily with CMT
Joe is an active member of Team CMT and we appreciate all he does for HNF. He has been busy performing, raising awareness and exercising for a cure! While Joe was performing The Music Man at Philadelphia’s Walnut St. Theatre
Special Events
Posts related to Team CMT Members
From our Blog
Work, Ride, Eat, Sleep, Repeat…
One of the things that keeps my motivation up is almost every time I go on a ride I set new personal records on the same segments that I ride weekly.
March 29, 2015: OK…Now What?
January 15th 2015. That was the day I got my official invite to the race, that was the day of no turning back, that was the day I realized I was going to riding my bike a lot this spring and summer, a whole lot!
Bike NY Spotlight: Kristin Gelzins
I am signing up for my VERY FIRST Five Boro Bike Tour. I need your help to find a cure for CMT. Please consider donating to my fundraising page to help me, my family and everyone living with CMT
Team CMT Takes on the Bermuda Triple Challenge
Meet Team CMT member Bill Morgan. Bill and Liz (his wife) recently ran three races back to back in Bermuda for Team CMT.
Sunday May 1, 2016: 2016 TD Bank Five Boro Bike Tour
HNF is thrilled to have been chosen for the fifth year as a Charity Partner for the 2016 TD Bank Five Boro Bike Tour.
Join Team CMT – Be a part of finding a cure!
You can join us, and truly make a difference. Register to be a Team CMT member and you’ll be part of an international effort to change the future for those living with CMT.
Meet Elizabeth Stenz, Team CMT Member
Her sister was diagnosed with CMT when she was 14, and since then her and many family members have become very familiar with the disease and have worked to raise awareness.
Grab Your Shoes and Spin CRANK Style NYC!
Dust off those spin shoes and come out to CRANK NYC (Upper East Side – 1658 Third Avenue) Saturday, September 27, 2014 from 1pm to 3pm and Spin-For-A- Cure!
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.