CMTA Legacy Society

Your legacy can help bring an end to CMT. Learn how a planned gift can make an impact for generations to come.


Amy Keller had always known about CMT as it runs in her family. But, as a healthy, active child who grew up into a symptom-free adult, it had never crossed her mind that she, too, would one day receive that same diagnosis. “I always thought that if you didn’t show signs as a child, then you must not have it,” says Amy.

Fast forward to 2016, when Amy broke her foot in three places. Recovery from the event was short-lived because Amy continued to suffer breaks and to tear tendons. “I kept telling my podiatrist, ‘I’m not doing anything, I swear!’” It was then that Amy’s podiatrist began to examine her reflexes, leading to a diagnosis of Charcot-Marie-Tooth disease.

Upon receiving the devastating news, Amy reached out to fellow family members for advice and answers. “Amy, you are going to have to give up your job as a barber. You’ll never be able to be on your feet all day,” she was told. Negative forecasts of disappointments to come left Amy deeply discouraged.

Amy Keller and STARS

The walls of Keller’s Barber Shop are covered with the CMTA STARS Amy has sold to raise funds for CMT research.

One fateful day, Amy recalls, she decided she was tired of feeling down about her diagnosis of CMT. She thought if she could get more information, she might find a way to make a difference not only in her own life, but also in the lives of others. A google search of “CMT” led Amy directly to the CMTA’s contact information, and immediately she dialed the number. “I called looking for a podiatrist but found so much more!” After discovering the CMTA’s mission, work and resources, Amy recalls her resolve to “take my negative and turn it into something positive … if I start raising money this year, then we will be that much closer to finding a cure.”

Today, not only is Amy an active hairdresser and the owner of Keller’s Barber Shop, but she’s also making huge waves in her community through two CMTA fundraisers. Early this year, Amy started selling CMTA STARS to her clients, which are mounted on the walls of Keller Barber Shop, raising both awareness and funds for CMT research. So far, Amy has raised over $2,000.00! Additionally, Amy hosted a Bingo Night fundraiser to further the CMTA mission.

Amy is excited about the future of CMT research and is thrilled to be a part of the change. You, too, can bring awareness to your community and pave the path to a cure for CMT! Learn more about starting your very own fundraiser at www.cmtausa.org/ways-to-give/justownit/.