Written by and for the CMT community, the new book collects the experiences and advice of those living with CMT on subjects ranging from bracing and stretching to employment and transportation.
For Ava Illingsowrth there are no barriers. There are no obstacles. For her, challenges are just opportunities to defy limits. Ava is a runner with the MDA’s Team Momentum, MDA’s endurance training team that helps people train for half or full marathons while supporting kids and adults living with muscular dystrophy. Ava herself is one . . .
When I was 25, I took an unlikely job as an editor at a travel magazine. As a journalism graduate, the editing part of the job was a natural fit; as someone who’d never flown on a plane, the traveling part seemed a little daunting. I’d been diagnosed with Charcot-Marie-Tooth disease six years prior, but . . .
Gianna Schwartz was born to write. Just 10 years old, the fifth-grader from Bettendorf, Iowa, has already won writing contests sponsored by PBS and participated in poetry slams. She’s even written a children’s book that was purchased at an auction by a Major League baseball player. Gianna — who is the Iowa State Goodwill Ambassador . . .
Few things are better than the perfect gift — except, perhaps, the gift that gives love to the recipient and to a whole community as well. This season, surprise your family with gifts that give to MDA families — and MDA research — too. Good Reads Stack your family bookshelf with must-reads that help explain . . .
Bernadette Scarduzio doesn’t like secrets. Her life is an open book — in fact, now it’s a documentary. But Bernadette and her struggles didn’t start out in the spotlight. Her disease was a secret. Born with Charcot-Marie-Tooth Disease or CMT, an inherited disorder which impacts the nerves in the legs and arms, Bernadette was in . . .
Henry Houlden, professor of neurology at the MRC Centre for Neuromuscular Diseases, University College London Institute of Neurology in England, was awarded an MDA research grant totaling $288,151 over three years to elucidate the genetic causes of severe forms of Charcot-Marie-Tooth disease (CMT) and other types of early-onset neuropathy. Identification of the causative genes could . . .
13-year-old Melissa Shang is an activist, an advocate and an author. She’s spoken at the United Nations, given a TedX talk and just published her first book. She is a girl on a mission. And it all started with an American Girl doll named Isabelle. For Melissa, Isabelle was the last straw. Every year, American . . .
Since its inception, MDA has invested more than $1 billion in neuromuscular disease research to uncover new treatments and cures. In 2016 alone, MDA awarded 66 new research, development and research infrastructure grants with a total funding commitment of more than $17 million. These and other MDA grants fund research projects designed to uncover the . . .
This summer MDA challenged our families, friends, sponsors, staff and others around the nation to share their stories about living life without limits despite the challenges of neuromuscular disease. Some shared moments tied to pursuing an education or career that was thought to be out of reach. Some talked about skydiving, hiking or running a . . .
