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 the forearms. The progression of CMT is generally slow, usually isn’t life-threatening, and it almost never affects the brain. School Brayden is a 1st grader. Interests Brayden is a Cub Scout. He enjoys drawing, coloring, watching TV and playing the drums. MDA Activities Brayden LOVED his fi ..read more

Recently published results from an MDA-supported study conducted at the University of Sydney (Australia), show that progressive resistance exercise not only is safe, but it can help to significantly reduce the muscle weakness experienced by people with Charcot-Marie-Tooth disease (CMT). In the study, which involved a total of 60 children with different types of CMT ages 6 to 17 years, participants completed a regimen consisting of exercise three times per week for six months, using a custom-built exercise cuff for the foot (similar to ankle weights commonly available in sports stores). After ..read more

Researchers at the University of California, Davis Neuromuscular Research Lab are seeking individuals with or without neuromuscular disease (ages 2 years or older) to participate in a research study to test the feasibility of using a wearable gait sensor to collect data as part of a new outcome measure for use in future clinical trials.  This study does not involve an intervention. Enrolled participants will be asked to perform approximately 1/2 hour of light to moderate functional mobility testing (walking, jogging) while wearing a belt with a mobile phone or smart watch to collect ..read more

Leah, Bevsi, and Jaime Zelaya Name almost any sport, and it probably can be adapted for various abilities. That includes baseball, skiing, surfing, rock climbing, football, hockey, rowing, and more. The way a sport is adapted varies based on the type of equipment used. For example, there are wheelchair versions of tennis, curling, basketball, and rugby. Other sports use specialized equipment. Adaptive skiing uses a special type of sled mounted on one or two skis. With adaptive surfing, a surfer can ride a wave sitting or lying on a specially designed board. “There is a whole world out there wh ..read more

On Oct. 28, 2021 the Muscular Dystrophy Association (MDA) announced the awarding of 18 new grants totaling over $1.6 million toward neuromuscular disease (NMD) research. These new grants represent a continued commitment by MDA to fund groundbreaking research that will one day lead to treatments and cures for the diseases in its program. The newly funded projects aim to advance research and therapy development in multiple areas including amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD), spinal muscular atrophy (SMA), Charcot Marie Tooth disease (CMT) and myotonic dystroph ..read more

Researchers at Ohio State University are seeking adults living with Charcot-Marie-Tooth disease type 1 (CMT-1) and type 2 (CMT-2) to participate in a one-month observational study (CMT Establish). This study is designed to assess whether individuals with CMT-1 and CMT-2 exhibit altered communication between nerves and muscles, known as neuromuscular junction (NMJ) transmission, compared to healthy volunteers.  Participants will be required to attend four clinic visits every one to two weeks over the course of the one-month study, and will undergo muscle and nerve testing at these vi ..read more

Staying active helps 11-year-old Callen maintain his muscle mass and mobility with CMT. He just thinks it’s fun. Like many middle-school kids, 11-year-old Callen, of Emmaus, Pennsylvania, has turned his mom, Jamie Moulthrop, into a chauffeur, she jokes. He participates in karate, baseball, hockey, and surfing, and he meets up often with friends at the pool and splashes around for hours.  Unlike the other kids around him, though, Callen has Charcot-Marie-Tooth disease (CMT), a progressive neuromuscular condition that significantly impacts muscle development and nerve firing. Making su ..read more

Lainie Ishbia, MSW, is a mom, wife, blogger, fashionista, and disability and empowerment speaker. She wears leg braces and struggles with buttons and everyday fine motor tasks because of a slowly progressive neuromuscular disorder called Charcot-Marie-Tooth disease (CMT). Lainie is passionate about helping people with disabilities to look and feel their best. She created a lifestyle and fashion blog called Trend-Able to give her “Perfectly Imperfect” followers tools, ideas, and inspiration for living their best lives. In honor of CMT Awareness Month 2020, she’s s ..read more

We are passionate about Muscle Walk at MDA. This life-changing event strengthens families and communities, helps fund research breakthroughs, provides care for kids and adults, and empowers families with services and support to live longer and grow stronger. For these reasons alone it’s obvious why we love Muscle Walk. But don’t just take our word for it. Learn why five MDA families are equally dedicated to Muscle Walk, and why you should also support this incredible cause. 1.Help others Former MDA Georgia State Ambassador Alexas, who lives with SMA, participates in Muscle Walk to help ot ..read more

In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve “hacked” situations like getting groceries and receiving assistance, how they’ve maintained contact and safety in an uncertain time. MDA encourages all families to follow the guidelines put forth by the U.S. Centers for Disease Control and Prevention. A ..read more