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.
Designing a Better Grip Active Hands Q&A with Rob Smith
When we learned of Rob Smith’s story, and how his line of gripping aids came to be, we knew it was one worth sharing.
Traveling With A Disability
We interviewed Bernadette to ask her to share her tips and tricks for traveling with a disability.
Meet Alana Kessler, MS RDN E-RYT: Nutritionist, Dietitian & Wellness Expert
Are all of your CMT symptoms really CMT symptoms?
Meet Lainie Ishbia Speaker – Behavioral Health & CMT
Meet Lainie Ishbia who will be speaking during the Voice of the Patient Weekend about behavioral health & CMT.
Meet Linda Crabtree: Author of “CMT and Me”
An intimate 75-year journey of love, loss and refusal to surrender to a disabling disease.
CMT & Finances
Disability and financial expert, James Traylor, provided a very informative presentation on the basics of navigating disability benefits and services.
CMT Careers: No Piece Of Cake
Sometimes physical challenges can dictate job and career paths.
Breathing Problems? What Do They Mean, Breathing Problems?
Though CMT is rarely fatal, respiratory complications are one of the ways it’s possible to die from CMT.
Q&A with Dakota Reilly Impact of AlterG on Charcot-Marie-Tooth
Learn how this CMT1A patient uses the AlterG treadmill to manage her CMT symptoms.
Tips for Living with CMT
Living with CMT can be a challenging journey. Here are some helpful tips.