Editor’s note: The following is adapted from a letter Stephanie Hoover wrote to family and friends to ask them to support her in the Louisville Muscle Walk. We thought her characterization of the impact of her disease and her eloquent description of the community she has found within MDA were worth sharing. We hope you agree. . . .
Brayden Hometown: Fairdale, KY Age: 8 Diagnosis: Charcot-Marie Tooth (CMT) Favorite School Subject/Activities: I enjoy Math, GymTyme Cheer, and being in the spotlight. Favorite People and/or Pets: I like Spiderman, Batman, The Flash, and The Arrow. Other people I really like are my mom, dad and brothers, Dylan and Nate. I have two dogs and two cats. Interests: I love . . .
Hunter Hometown: Burnsville, MN Age: 10 Diagnosis: Charcot-Marie-Tooth Disease (CMT), which causes muscle weakness and atrophy, and some loss of sensation in the feet, the lower legs, the hands and the forearms. Favorite School Subject/Activities: Art and time in the library. Favorite People and/or Pets: I live with my parents, Alan and Dana, and my younger brother Hayden (7). . . .
Three-year-old Paxton is the tiny, grinning powerhouse that keeps his grandpa, Stuart Horton, going. His smile gets Stuart out of bed every morning and, even though it’s tough for the 53-year-old with Charcot-Marie-Tooth disease to travel, it’s his grandson’s future that motivates Stuart to participate in MDA Muscle Walk this year. “It’s the simple things . . .
Researchers are looking for people with type 1A Charcot-Marie-Tooth disease (CMT1A) to participate in a new pivotal phase 3 clinical trial of the investigational drug PXT3003. The trial aims to determine whether PXT3003 is effective and well-tolerated in people with CMT1A. PXT3003 is an oral low-dose combination of three different drugs designed to target the . . .
Shamrock season is full swing! Have your local retailers gone green for MDA yet? MDA’s iconic paper Shamrocks sell for $1, $5 or more in tens of thousands of retail locations across the country each February and March and help families live longer and grow stronger. You can support MDA Shamrocks by adding this Twibbon to your social media . . .
Robert Burgess, a professor at The Jackson Laboratory in Bar Harbor, Maine, has been awarded an MDA research grant totaling $300,000 over three years. Burgess and co-investigator Scott Harper, associate professor at Nationwide Children’s Hospital Center for Gene Therapy in Columbus, Ohio, will test an AAV gene therapy approach to specifically block the altered form . . .
Alexis “Lexi” Noland, Age 15 Glendale, AZ Home and Family Lexi is the daughter of Casey and Keia Noland. She has three sisters and one brother. Diagnosis Lexi has Charcot Marie Tooth which is a group of hereditary disorders that damage the nerves in your arms and legs (peripheral nerves). School Lexi is a freshman . . .
Hannah Grace Thomas, Age 12 Fayetteville, AR Home and Family Hannah has a loving family including her Dad Mark, mom Mary, and sister Chelsea. She also has many aunts, uncles, cousins and her beloved dog Michi. Diagnosis Hannah has Charcot Marie Tooth, which causes damage to the peripheral nerves and relay sensations, like pain and . . .
Brayden Tiernan, Age 6 Fairdale, KY Home and Family Brayden is the son of Patrick and Rebecca Tiernan. He has 2 brothers, a dog and 2 cats. Diagnosis Brayden has Charcot Marie Tooth disease (CMT). CMT causes muscle weakness and atrophy, and some loss of sensation in the feet, the lower legs, the hands and . . .
