Participating in Clinical Research Means Giving of Yourself — Literally — to Science

The Informed Consent Authorization Form is 12 pages long. My husband, Allen Carney, reads it carefully, initials in several places and signs at the end. And that’s the easiest part of participating in a research project. Welcome to the world of giving your time and body to research for Facioscapulohumeral muscular dystrophy. My husband Allen, . . .

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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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2016 MDA Clinical Conference: Caring for Kids and Adults from Day One

During the last few years, we have witnessed unprecedented progress fueled by an astounding volume of research and improvements in care for kids and adults with muscular dystrophy, ALS and related muscle-debilitating diseases that take away strength and mobility. I have been working in the neuromuscular community for more than 15 years, and I am energized . . .

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Christmas Baking Day

It’s Christmas baking day today. Actually, the preparations started a few days ago, with a shopping trip, of course. Then, last night, Katherine helped me make a batch of Shortbread Cookies using my grandmother’s recipe. We also made a batch of pastry dough for the mince tarts and butter tarts planned for today. So now . . .

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