Strongly


An expression of the live unlimited spirit, stories and voices of the MDA community

Meet Devin, MDA’s 2016 State Goodwill Ambassador from Wisconsin

Devin Hometown: Manitowoc, Wisconsin Diagnosis: Duchenne muscular dystrophy Age: 14 Favorite School Subject/Activities: I really like science and health. Favorite People and/or Pets: I love my family, my dogs and everyone at MDA. Interests: I enjoy drawing cars, watching sports, riding ATVs, making hand-made rainbow loom bracelets and playing video games. My favorite Things About MDA: MDA helps so many people. . . .

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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 . . .

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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 . . .

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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 . . .

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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 . . .

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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 . . .

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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 . . .

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The Three P’s of Transitioning from Pediatric to Adult Clinical Care

  Think back to when you were 16. It may have been a time of excitement, optimism, awkwardness, and questionable style choices. These feelings during adolescence are universal – and are also experienced by young adults with neuromuscular diseases. Like all teenagers, the youth served by MDA have incredible talents, aspirations and promise. They also . . .

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