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.
EmBRACE It Podcast with Lainie Ishbia and Estela Lugo
We want our CMT viewers and listeners to feel like they can relate to us, and that it’s perfectly okay to be imperfect!
Catching Up with Team CMT Member, Gabrielle Blakey
I felt like “The Little Engine That Could.” I decided that day that CMT does not define me, it’s just a part of me. Read Gabrielle’s inspiring story here!
Marvin, my Service Dog
Now thanks to Marvin, my Canine Companions for IndependenceⓇ service dog, my life is so much fuller.
CMT&Me Study
There’s been little research to date into how CMT affects the lives of patients…
Cannabis & CMT Webinar Overview
CMT-Connect hosted its first webinar on the popular topic of Cannabis this past April.
Swimming Towards Success, Jamal Hill
The Los Angeles native was a natural born swimmer, and has continued his aquatics career throughout his life.
“Take A Look At This Heart“
Love, Sex & Disability Revealed in Groundbreaking New Documentary by Ben Duffy
I Am Helena The Mermaid And I Have CMT Disease
I try to be a positive influence to others in wheelchairs or with disabilities, and hope I can share beauty and magic with those who need it most.
Cannabis Community Care & Research Network (C3RN) Partners with HNF
Cannabis Community Care & Research Network (C3RN) is excited to be partnering with HNF to advance Cannabis research, advocate for patients in need, and educate the community!
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.