Thank you to the many faces and families who have chosen to share their stories and fundraise for their rare subtype of CMT.
Please browse their stories
below and help their cause.
On Tuesday, September 17th 2013, the world changed for the better – just a little bit. It was the day that Bernadette, the first full-length documentary on Charcot Marie Tooth disease, was released.
CMT4 (GDAP) Gene Therapy Research Program
Grace’s Courage Crusade
A passionate mission of the Sidoti/Caldarone family to support those living with Charcot-Marie-Tooth disease, which affects Marybeth Caldarone and her daughter Grace, who has CMT2A.
Iris Adler's H.E.L.P. Fund
Iris started this fund (Help Elliot Live Proud) after her grandson Elliot was diagnosed with CMT2A.
James has an extremely rare genetic mutation of the CNTNAP1 gene. James is unable to move like a “normal” child and is unable to use his voice. There is no cure.
Westerkamp Family's HNPP Fund
Michiel (dad) and Andy (son) Westerkamp both have HNPP and own Real Isolates, a leader in the cannabinoid industry.
Living with CMT
We honor and thank the patients and families who so generously created these funds to support research for specific types of CMT.
Contact email@example.com if you would like to create a fund.
Charcot-Marie-Tooth Frequently Asked Questions
Charcot-Marie-Tooth Frequently Asked Questions: Learn more about the most commonly inherited peripheral neuropathy affecting approximately 1 in 2500 adults.
Living with CMT: Key Topics
There are a number of adaptive aids that can help make everyday tasks easier. This section lists just a few of them. Some of these items can be adapted from materials at home, others must be purchased.
Embrace the Brace: A Mother’s Perspective on Helios
We had the highest of hopes that these custom braces would be the difference between night and day for Dakota.
From the words of a CMT Hero
“FAITH, LOVE AND HOPE KEEPS TIMMY DIXON GOING!”
I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over
One Woman’s Success with Surgery
Read about how this CMT patient endured seven surgeries over the past dozen years to cope with the effects of CMT.
Personal Profile: Wendy Lowe, Nurse: Trauma Surgical Intensive Care Unit
As a little girl, growing up with Charcot-Marie-Tooth Disease (CMT), Wendy Lowe spent a lot of time in the hospital.
Expert Q and A: Orthopedic Surgeon, Dr. Glenn Pfeffer
Learn more from orthopedic surgeon Glenn Pfeffer, MD about surgery and CMT patients.
More Magazine features story on Charcot-Marie-Tooth
A recent article in More magazine featured the story of Hereditary Neuropathy Foundation president Allison Moore and her experiences living with Charcot-Marie-Tooth.
Be True to Yourself–Living with Charcot-Marie-Tooth
This CMT patient has worked with thousands of CMT families and draws her knowledge from past and present experiences.