Meet Payton, MDA’s 2016 State Goodwill Ambassador from Ohio

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 . . .

Read More

Trial Seeking Participants: Finding the Optimum Regimen for Duchenne Muscular Dystrophy

Researchers are looking for boys with Duchenne muscular dystrophy (DMD) to participate in the ongoing phase 3 clinical trial, Finding the Optimum Regimen for Duchenne Muscular Dystrophy (FOR-DMD). The trial will compare three different corticosteroid regimens in boys with DMD, ages 3 to 7 years. Corticosteroids, such as prednisone and deflazacort, work as anti-inflammatories or . . .

Read More

Meet Ryan, MDA’s 2016 State Goodwill Ambassador from Illinois

Ryan Hometown: Naperville, IL Age: 13 Diagnosis: I have Duchenne Muscular Dystrophy, which is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Favorite School Subject/Activities: My favorite school subjects are PE and Math. Favorite People and/or Pets: Aside from my mom, dad, and sisters, I love the Chicago Blackhawks. Interests: I enjoy going to watch . . .

Read More

Why I Walk: Hope for Harrison

MDA Muscle Walk is a life-changing event that strengthens families and communities. But it’s more than anotherfundraising walk. It’s a powerful experience that forges lifelong connections, celebrates families and the barriers they overcome and turns hope into answers. We will be featuring stories of MDA families and their dedication to Muscle Walk here on Strongly . . .

Read More

Improving Newborn Screening for Neuromuscular Disorders

MDA recognizes the importance of early diagnosis for neuromuscular disorders to optimize opportunities for effective treatment. This includes supporting initiatives to understand the impact of newborn screening in neuromuscular disorders. In early March, MDA sponsored an international conference in St. Louis, MO, “Newborn Screening for Neuromuscular Diseases: Improving Patient Outcomes and Evaluating Public Health Impact,” that . . .

Read More

Accessible Air Travel: An Important Element of Living Life Without Limits

In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the . . .

Read More