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.
She is at it, again! Jenny Decker’s “Just a Lap” circumnavigating the globe
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...
The Key Role CMT Patients Play in Research
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.
Moving Away From Perfectionism
The American Psychological Association (APA) understands perfectionism as the tendency to expect flawless performance from others or oneself over what the situation requires.
Alan Jackson Reveals He Has Charcot-Marie-Tooth, CMT
Following the recent interview of country music star, Alan Jackson, with Jenna Bush Hagar on the TODAY Show where he revealed that he has balance issues related to his CMT, Prevention magazine contacted HNF for more information about CMT. HNF Founder, Allison Moore was quoted in the article:
HNF Launches the Ultimate CMT Amazon Wish List
HNF Launches the Ultimate CMT Amazon Wish List
Rare Disease Day “Living with CMT” 2022 Art Competition
Faces of CMT Photography Contest that represents challenges living with CMT and strategies to overcome them
Brace Yourself For Another Day
Ginnell McDonald interview on writing Brace Yourself For Another Day
Young Entrepreneur with CMT1A Launches Company
Dakota launched her own business, Blue Bear in August 2020 with a full line of greeting cards, stickers and enamel pins.
Joy Perry and The Christmas Bow
Joy Perry, CMT patient cast in a new Hallmark Christmas movie “The Christmas Bow.
Meditation for CMT is a No-Brainer
Can meditation benefit Charcot-Marie-Tooth symptoms? The overwhelming research and evidence points to a resounding YES… Here are 7 reasons why!