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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Some said he couldn’t play sports. Ethan Lybrand said “Watch me!”

The Lybrand family motto is “finish strong,” which, for them, means never giving up and always turning can’ts into cans. It’s no wonder, then, that the youngest Lybrand, 6-year-old Ethan, is a living embodiment of the Live Unlimited spirit. Just three days before his second birthday, Ethan was diagnosed with Duchenne muscular dystrophy. Although the deadly disease will gradually . . .

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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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