News & Stories
See the latest news about CMT drug development and read stories from the CMT community that highlight why we must deliver treatments and cures during our lifetime.
20 Most Popular CMT Stories & Resources from 2020
2020 has been a year of information overload. To help the Charcot-Marie-Tooth (CMT) community navigate these staggering statistics, we’ve developed a round-up of the 20 most read articles and stories about CMT on cmtrf.org during 2020. You were most interested in three key areas: 1) stories from the CMT community, 2) the latest in research development and discovery and 3) understanding CMT and specifics about the disease.
After 10 Surgeries in 10 Years to Address Deformities from CMT, This Young Woman is Fighting Back
Surgical recovery takes up to 12 weeks and requires me to take a leave of absence from my job, lay with my toes above my nose, spend most of the day alone, and give up my independence. I’m unable to shower on my own, walk without crutches, and have become very socially isolated, especially during COVID-19 quarantine. Given that I’ve had so many surgeries in such a short period of time, it’s difficult to maintain steady employment, let alone a full-time career. All of that is on hold due to my CMT.
Hope Alone Won’t Save My Hands, But a Treatment Will
I heard a loud pop. Then came the sudden swelling. All I’d been doing was walking down the sidewalk when my left leg snapped. At first, I thought it was just sprained. I kept limping on it for two weeks, until a doctor confirmed it was broken. Doctors gave me three options: Live with the pain and wear a removable cast for the rest of my life, undergo another surgery that probably won’t work, or amputate a portion of my leg. I chose amputation. Read more about Joe’s journey and what he’s doing to give people with CMT more than hope.
Thank You for Giving Me More Than Hope
This year has brought great momentum in the fight against CMT. At the CMT Research Foundation, we are hearing from scientists that it feels like something special is in the air. Conferences and journals are full of new discoveries, fundamental problems in CMT are being solved, new genes are being discovered, and new drugs are being developed. Read more about the progress.
CMT Research Foundation Welcomes Dr. James Hendrix to Scientific Advisory Board
The CMT Research Foundation is pleased to announce that James Hendrix, Ph.D., has joined our Scientific Advisory Board to help guide research funding to deliver treatments and cures for CMT.
One Million Steps to the Holidays for CMT
By: Gary Donaldson, community manager, CMT Research Foundation As I approach my one-year anniversary as the community manager for the CMT Research Foundation, I’ve thought a lot about how I should mark this occasion. I decided the best way to celebrate is by facing...
How We Get from Today to Approved CMT Treatments: An Interview with FDA Director Dr. Peter Marks
The CMT Research Foundation is asking and answering the most pressing questions patients have about the need for treatments and cures. In episode 3, CMT Research Foundation CEO Susan Ruediger interviews the FDA’s Dr. Peter Marks to discuss gene therapies as a potential treatment option for CMT, what the approval process looks like and how patients can expedite it.
WATCH: Power of the Patients: How We Change the Pace of Drug Development
The CMT Research Foundation is asking and answering the most pressing questions patients have about the need for treatments and cures. In episode 2, CMT Research Foundation CEO Susan Ruediger interviews Cure SMA’s Chief Scientific Officer Dr. Jill Jarecki, DTx Pharma Scientist Dr. Raffaella Gesuete and patient advocate Gary Donaldson to understand what patients can do today to influence the drug development process and speed progress. {HINT: Patients have the power to change everything!}
Susan B. Canavari Joins CMT Research Foundation Board of Directors
Deeply Experienced Brand Marketer to Help Increase Awareness of CMT and Accelerate Research ATLANTA (September 21, 2020) The CMT Research Foundation, a nonprofit focused solely on delivering treatments and cures for Charcot-Marie-Tooth disease during our lifetime,...
A Family’s Fight to Change Their Daughter’s Future
Eight-year-old Leonor struggles to walk, sit up straight and hold a glass of water. Other kids make fun of her because she has to wear leg braces. When Leonor was diagnosed with CMT, doctors said she’d ben in a wheelchair for life. Her family refuses to accept that fate, and so do we. There’s always something we can do. Learn how you can take action to end CMT.
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