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.
More Than Hope: An Action Plan to End CMT
As we approach the end of 2020 and look ahead to a new year, it’s natural to feel hopeful about what the future may hold — hope for an end to the global pandemic; hope for happiness and good health for our families; and hope for an end to Charcot-Marie-Tooth disease (CMT). The CMT Research Foundation shares these hopes, but we know delivering treatments and cures for CMT quickly requires more than hope. It requires vision, commitment, wisdom, a strong plan, and most importantly — action.
See a preview of the CMT Research Foundation’s 2021 action plan.
‘Tis the Season for Scientific Breakthroughs
During a year when so many things have been postponed, changed or cancelled, there is one thing that hasn’t stopped — the CMT Research Foundation’s efforts to end CMT. Research continues, even during the holidays, to find treatments and cures as quickly as possible. These researchers will be working this holiday season to uncover scientific breakthroughs. Here’s how several of our researchers will be celebrating by continuing their work for you.
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.
AcuraStem Scientists Demonstrate Positive Early Results for CMT2A Treatment
The CMT Research Foundation is currently funding a research project led by AcuraStem aimed at producing effective treatments for CMT2A. Using stem cells derived from adult patients, AcuraStem scientists have tested thousands of compounds for their ability to promote...
CMT Research Foundation Project Shows Progress in a Gene Therapy Approach to Treat CMT1A
The CMT Research Foundation is currently funding a research project led by Dr. Kleopas Kleopa and his team at the Cyprus Institute of Neurology & Genetics to study a gene therapy approach to lower levels of PMP22, the gene that causes CMT1A. While no one can...
DTx Pharma Shows Continued Progress in Reducing PMP22 Levels in Animal Models of CMT1A
The CMT Research Foundation is currently funding a research project led by DTx Pharma to design genetic therapies for Charcot-Marie-Tooth disease (CMT). By attaching the genetic sequences to molecules called long chain fatty acids, they allow the therapies to target...
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...
Important Research News Announcements
- The Role of ESCRTs in Regulating Nervous System Function November 30, 2024
- Genomic Studies in Charcot-Marie-Tooth Disease July 31, 2024
- Charcot-Marie-tooth disease type 2A: An update on pathogenesis and therapeutic perspectives March 5, 2024
- Accelerate Clinical Trials in CMT (ACTCMT) Study March 1, 2024
- Creation of a Schwann Cell Gene Regulatory Network February 29, 2024
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