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.
Meet virtually with host, Julie Stone & fellow CMTers from all over the world for a fun and interactive chat about all things CMT. Connect with valuable resources, experiences, tips, and new friendships! This will be a private and safe event (not recorded). Each...
Pediatric CMT Natural History Study enhancement to their Charcot-Marie-Tooth (CMT) and Inherited Neuropathies (IN) patient registry, Global Registry for Inherited Neuropathies (GRIN).
Over 200 individuals have participated in hopes of receiving a genetic confirmation of their CMT symptoms. Although many have found a definitive diagnosis, many others have received their results as a variant of uncertain significance (VUS)
HNF Awarded 2023 Health Equity in RARE Impact Grant For Spanish CMT PSA Awareness Campaign with Diagnosis & Patient Care Toolkit. The Hereditary Neuropathy Foundation is thrilled to announce that we are a recipient of the Global Genes Health Equity in RARE Impact Grant!
Kenneth’s groundbreaking book, CMT-Associated Genes and Their Related Subtypes: The Definitive Guide, is available as a free eBook soon to be added to the HNF site.This guide represents a comprehensive accounting of the identified subtypes and a comprehensive...
The support group offers time to participate in a variety of both educations & open discussion meant to help everyone engage with others on similar journeys.
When searching for support and answers to CMT questions, social media can be very beneficial. However, not everyone is on social media, and not everyone feels comfortable asking questions that friends and family may see…especially if they are more private in nature....
Charcot-Marie-Tooth disease is one of several hereditary neuropathies that affect the peripheral nervous system. CMT affects about 1 in every 2,500 people, making it one of the most common inherited neurological disorders worldwide.
She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe In 2016, Jenny kayaked around the Big Island to raise money for HNF’s Therapeutic Research in Accelerated Discovery (TRIAD) research program and to spread awareness for Charcot-Marie-Tooth...
Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.