Thank you!
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.
⇓
Addie's Tale
Bernadette
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 Cure
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.
MTRFR-C12orf65
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 protected] if you would like to create a fund.
Rick’s RV Road Trip to Spread Awareness for Charcot-Marie-Tooth
On December 1, 2016, Richard Cole (Rick) will be starting life on the road in an RV–and his road-trip will help spread awareness for Charcot-Marie-Tooth (CMT).
Q&A with CMTRV’er Richard Cole
RVing blog Q&A
Headaches and Charcot-Marie-Tooth
One topic that has been addressed is headaches and CMT. Some CMT patients have reported tension headaches from off-balance gait, scoliosis, and neck & spine arthritis.
How To Stay Sun Safe Year Round
The cumulative damage caused by exposure to the sun’s harmful ultraviolet rays (UV) can lead to premature skin aging, damage the eyes and surrounding skin, and raise your risk of skin cancer.
Radio interview with Jenny Decker
Radio interview from last week with Jenny Decker about how she is kayaking around the Big Island to raise awareness and funds for a Charcot-Marie-Tooth.
Cholesterol And Your Health
About one in every eight American adults have high levels of total cholesterol. Does Charcot-Marie-Tooth contribute to high cholesterol.
Meet Molly: A True CMT Warrior
Kassandra generously shared the story of their friendship with us: I met Molly while living abroad in Tel Aviv, Israel. She just moved there and reached out to me to write for a foodie website I was running at the time.
Symptoms & Charcot-Marie-Tooth Disease
Kuddos to our Inspire member HMBSusan! She initiated this important conversation in our Inspire Support Community. When HNF partnered with the Inspire Community, our mission was to encourage conversations just like this one.
Living with Charcot-Marie-Tooth: Leg Braces & Air Travel
CMTers who use leg braces share their tips and best advice for air travel in our CMT Inspire Community.
We’re Here To Help: The Hereditary Neuropathy Foundation’s Healthcare Provider Directory
The Hereditary Neuropathy Foundation is thrilled to announce the launch of the first online health care provider directory that has ever been offered to this community to include comprehensive testing to certify health care professionals (HCPs).