When opportunity knocks, 15-year-old Justin answers. Born with CMD, Justin has traveled to China, been on a 500-mile bike ride across Iowa, and even modeled in a fashion show. How? Justin always says, ‘Yes.’ That’s how he lives unlimited.
Clara was 2 years old when she was diagnosed with congenital muscular dystrophy. Her family was referred to their local Minneapolis MDA Care Center, and when they got there, Clara’s mom, Becky, says it felt “a bit like coming home.” Our MDA Care Center is a huge gift for us as working parents managing a . . .
Muscular dystrophy is a term that refers to a number of diseases that cause progressive loss of muscle mass resulting in weakness and, sometimes, loss of mobility. There are many different kinds of muscular dystrophy, each affecting different groups of muscles. In some types of muscular dystrophy, symptoms begin in childhood. In other forms, symptom . . .
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 . . .
Happy shrieks erupted from the crowd as Payton Smotherman was wheeled into the mob of campers. “As soon as I pushed her into the group of people in her wheelchair, like four or five people all saw her and recognized her at once,” says Angela, Payton’s mom. She chuckled as she recalled diving out of . . .
The investigational drug omigapil, under development by Santhera Pharmaceuticals, has received U.S. Food and Drug Administration (FDA) Fast Track designation for the treatment of congenital muscular dystrophy (CMD). Preclinical studies in disease models have shown the drug inhibits cell death and reduces body weight loss and skeletal deformation while increasing mobility and improving . . .
For Cheryle Elliot and her son, Dakota, the Muscular Dystrophy Association is like a part of the family. From selling MDA Shamrocks to attending their local MDA Lock-Up event to participating in Muscle Walk, they do it all — with Dakota smiling and laughing all the way through. Dakota was born with congenital myotonic muscular . . .
Payton Hometown: Cincinnati, Ohio Age: 13 Diagnosis: Congenital Muscular Dystrophy (CMD), a group of muscular dystrophies that become apparent at or near birth. CMD results in overall muscle weakness with possible joint stiffness or looseness. Favorite School Subject/Activities: Reading, writing, and art. Favorite People and/or Pets: I live with my older brother Jacob and my mom, Angela. I also . . .
Liza Pon, professor in the department of pathology and cell biology at Columbia University in New York was awarded an MDA research grant totaling $300,000 over three years to study the underlying mechanisms at work in CHKB congenital muscular dystrophy (CMD). Pon also will test whether therapies that promote function of a protein known as . . .