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.

Losing My Independence is Not Rare to Me

Losing My Independence is Not Rare to Me

When I was diagnosed with CMT at age 2, it wasn’t a surprise to anyone. I was the seventh person in my family to be born with the disease. Although we were familiar with CMT, we couldn’t understand why the disease was progressing faster in me than anyone else in our family. Read Monica’s story.

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Living in Pain Every Day is Not Rare to Me

Living in Pain Every Day is Not Rare to Me

The day after my 29th birthday, I received confirmation that the intense pain I’d been experiencing all my life was most certainly not in my head. It was Charcot-Marie-Tooth 1X. During the first year after my diagnosis, I fell into a deep depression. My family had a hard time accepting this diagnosis. Telling my story has changed my life, and I’m determined to change the future. Read more.

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

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

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.

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