Social Workers: Powerful Members of Your Health Care Team

For individuals and families living with neuromuscular diseases, having access to the right support is paramount to living life to the fullest. Groundbreaking research, clinical trials and care from the best physicians are critical. But so is everyday help, and that’s where MDA Care Center social workers come in. Social workers can help individuals address . . .

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Why Multidisciplinary Care Matters

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 . . .

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Emergency Preparedness Webinar for Individuals with Disabilities [VIDEO]

Last week, MDA’s Emergency Preparedness Webinar explored how important it is for individuals with disabilities or with access and functional needs to design a personalized emergency plan for themselves and their families so they are prepared and empowered to handle any kind of emergency or disaster. If you were unable to join last week’s webinar, . . .

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Meet Ashleigh: MDA Resource Specialist

If there was one piece of advice MDA Resource Specialist Ashleigh Peska could offer individuals with muscular dystrophy and other muscle-debilitating diseases, it would simply be, “don’t quit!” Ashleigh, who lives with limb-girdle muscular dystrophy (LGMD), is a shining example of this mantra. A college graduate and former MDA Iowa State Goodwill Ambassador, Ashleigh has . . .

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Eteplirsen Granted Approval for DMD: Turning Promise into Progress

Today we couldn’t be happier as, together with the Duchenne community, we celebrate FDA accelerated approval of eteplirsen to treat kids and adults with some forms of Duchenne muscular dystrophy (DMD). “This is something that we’ve watched, and hoped and prayed for, and seen it develop over the last seven years or so,” said Josh . . .

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Meet the MDA Resource Specialist: Hugo

Since the tender ago of five, Hugo Trevino, who has Spinal Muscular Atrophy (SMA), has been involved with MDA. From participating in MDA Summer Camp as a child to rallying behind causes like Fill the Boot and Muscle Walk, Hugo has always been dedicated to helping others live longer and grow stronger. Now, as a . . .

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Got questions? MDA’s new Resource Center has answers

MDA is pleased to announce that we have launched a new MDA National Resource Center that is now available to provide families one-on-one support from trained specialists. You can contact our MDA specialists at resourcecenter@mdausa.org and 800-572-1717 for resources and support. Specialists are available Monday through Friday 8 a.m. to 5:30 p.m. CST and are typically . . .

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