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.

Worrying About My Daughter’s Future is Not Rare to Me

Feb 17, 2021 | Life with CMT

CMT may be a rare disease, but it is anything but rare to me. The most challenging part of living with CMT is the emotional toll it takes. I often think about the significant moments of my life that are yet to come: Will I be able to take my daughter to a father-daughter dance? Will I still be able to walk her down the aisle when she gets married? Read more.

Caring for Someone with CMT: 3 Tips for CMT Caregivers

Feb 12, 2021 | Life with CMT

With no treatments or cures currently available for people with Charcot-Marie-Tooth disease, caring for someone with CMT may feel daunting. As a dad of a daughter with CMT and a friend to many with the disease, I know first-hand how physically and mentally challenging living with the disease can be. Here are three ways to help someone with Charcot-Marie-Tooth and be a supportive CMT caregiver.

Dr. Bruce D. Carter Joins Scientific Advisory Board to Help CMT Research Foundation Deliver Treatments and Cures

Jan 28, 2021 | Press Releases

Bruce D. Carter, Ph.D., has joined the CMT Research Foundation’s Scientific Advisory Board to help guide research strategy and funding to deliver treatments and cures for CMT. Dr. Carter is a professor of biochemistry and the associate director of the Brain Institute at Vanderbilt University. Read more about why he’s passionate about ending CMT and how he’ll be helping the CMT Research Foundation in its quest to do that.

Peter J. deSilva Joins CMT Research Foundation Board of Directors to Help Speed Treatments & Cures

Jan 21, 2021 | Press Releases

The CMT Research Foundation is pleased to welcome Peter J. deSilva as the newest member of our board of directors. With more than 30 years of experience as a results-oriented leader in the financial sector, Mr. deSilva will bring his world-class expertise in strategic development and financial management to help the CMT Research Foundation raise significant funds for cutting-edge research and scientific innovation. Read more.

Progress is Possible Because of You

Jan 11, 2021 | CMT Research Updates, Press Releases

As we begin 2021, I am overwhelmed with gratitude for your continued commitment to the CMT Research Foundation community. Despite a challenging last year, friends like you rose to the challenge and have made it possible for the CMT Research Foundation to fund new and...

How to Measure Progress in CMT Research: 8 Signs Research is Working

Jan 11, 2021 | CMT Research Updates, Drug Development, Life with CMT, Research News

It costs more than $2.6 billion to develop an approved prescription medicine and typically takes between 10 to 15 years to get a drug to clinical trials. With no treatments or cures currently available for diseases like CMT, it’s easy to question how donations to support scientific research make a difference. These 8 signs let you know when research is working.

Mom with CMT Loses Her Leg but Gains Strength for Her Daughter

Dec 21, 2020 | Life with CMT

My doctor told me it was the worst case of CMT he had ever seen. We reviewed my options: A fusion with no end to my pain, or amputation. Here’s what I chose and what I’m doing to change things for my daughter.

More Than Hope: An Action Plan to End CMT

Dec 17, 2020 | Press Releases, Research News

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

Dec 17, 2020 | CMT Research Updates, Press Releases, Research News

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.

After 10 Surgeries in 10 Years to Address Deformities from CMT, This Young Woman is Fighting Back

Dec 9, 2020 | Life with CMT

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.