Charcot-Marie-Tooth Disease (CMT)

Nancy Gale

Location

Manchester, CT

Nancy enjoys painting seascapes and portraits, and prefers working in pastels. This artwork is a painting of her son at age 2. Nancy’s work has appeared in several juried shows and galleries in Connecticut and Rhode Island. Her work was featured in an exclusive exhibit at the Groton Public Library in 1998.

Full name: 
Nancy Gale
Artist: 
Nancy Gale
Disease: 
Charcot-Marie-Tooth Disease (CMT)
Medium: 
Pastels

Jennifer Getson

Location

Longmont, CO

Jennifer worked in photography for many years and then turned to creating artwork using various media. Her artwork has been exhibited in numerous shows in Colorado and Nebraska, and she has works in private collections.

Full name: 
Jennifer Getson
Artist: 
Jennifer Getson
Disease: 
Charcot-Marie-Tooth Disease (CMT)
Medium: 
Oil

Amber Lowenstein-Williams

Location

Kenai, AK

Amber created this artwork at age 15. She graduated from Soldotna High School on Alaska’s Kenai Peninsula. Amber is a former MDA State Goodwill Ambassador, and she received the 1994 MDA Personal Achievement Award for Alaska.

Full name: 
Amber Lowenstein-Williams
Artist: 
Amber Lowenstein-Williams
Disease: 
Charcot-Marie-Tooth Disease (CMT)
Medium: 
Acrylic

Research Briefs: FA, MG, MM, MMD1, gene therapy

Edison drugs target FA, mitochondrial diseases

Living With

Dear Friends:

I've lived with CMT since my early 20s — more than half my life. The disease has progressed slowly over the years, mostly affecting my lower legs and hands, so that now I use a manual wheelchair part time.

George-Donahue

Read more ...

Clinical Trials

About clinical trials

A clinical trial is a test in humans of an experimental medication or therapy. Clinical trials are experiments, not treatments, and participation requires careful consideration.

Although it's possible to benefit from participating in a clinical trial, it's also possible that no benefit — or even harm — may occur. Keep your MDA clinic doctor informed about any clinical trial participation. (Note that MDA has no ability to influence who is chosen to participate in a clinical trial.)

Research

In 1991, the genetic causes of Charcot-Marie-Tooth disease (CMT) were completely unknown. By a decade later, MDA-funded scientists had helped identify 10 CMT-linked genes and found evidence for several others. (There are now thought to be more than 30 genes in which flaws can cause CMT.) This accomplishment has led to genetic testing for many types of CMT, which has greatly improved diagnosis.

Of equal importance, the ongoing hunt for CMT genes has given insights into treatments that might be used to stop or reverse the disorder.

Medical Management

Although there’s no cure for CMT, there are treatments that can be used to effectively manage its symptoms. These treatments have allowed many people with the disease to lead active, productive lives.

This section addresses the following:

Breathing difficulties
Drug warning
Hand weakness

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