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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Five Questions with Researcher Madhuri Hegde

Madhuri Hegde, associate professor in the department of human genetics at Emory University in Atlanta, was awarded an MDA research infrastructure grant totaling $300,000 over a period of three years to continue groundbreaking work to identify and characterize new gene defects that can cause limb-girdle muscular dystrophy (LGMD). In the era of precision medicine, it . . .

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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 1-833-ASK-MDA1 (1-833-275-6321) for resources and support. Specialists are available Monday through Friday 8 a.m. to 5:30 p.m. CST and are . . .

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Join Us for an Emergency Preparedness Webinar

September is National Preparedness Month. Emergencies can happen in an instant and without warning. From weather-related events and other natural disasters to emergencies such as chemical spills and power outages, the unexpected can put you and your family in danger — unless you plan ahead. Please join us for an important discussion about how families living . . .

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Five Questions with Researcher Steven Markus

Steven Markus, assistant professor at Colorado State University in Fort Collins, Colo., was awarded an MDA research grant totaling $300,000 over a period of three years to study alterations in the dynein gene and their effects in spinal muscular atrophy (SMA) and amyotrophic lateral sclerosis (ALS). His work to elucidate the molecular basis for dynein . . .

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Participants Sought for Dermatomyositis Trial

Investigators are seeking people to participate in a phase 2 clinical trial, sponsored by Idera Pharmaceuticals, to evaluate the effect of the experimental drug IMO-8400 on skin lesions and muscle weakness in dermatomyositis. While the cause of dermatomyositis is unclear in most cases, it is known that ongoing inflammation triggered by the disease, over time, . . .

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