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

Tips for Setting Up an Accessible Home Office

When the COVID-19 pandemic emerged in March 2020, Matthew Lawson’s employer — like many others around the country — temporarily closed its doors and had team members go remote to prevent spread of the virus. Matthew, an IT manager for Abilities in Motion in Reading, Pennsylvania, soon realized that working from home would not be . . .

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Research Study Alert: Observational Study of Clinical and Electrophysiological Outcomes in Adults with CMT

Researchers at Ohio State University are seeking adults living with Charcot-Marie-Tooth disease type 1 (CMT-1) and type 2 (CMT-2) to participate in a one-month observational study (CMT Establish). This study is designed to assess whether individuals with CMT-1 and CMT-2 exhibit altered communication between nerves and muscles, known as neuromuscular junction (NMJ) transmission, compared to healthy . . .

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Capricor Announces Positive Results from its Phase 2 Study of CAP-1002 to Treat DMD

On September 24, Capricor Therapeutics announced positive results at the World Muscle Society Virtual Congress from its phase 2 HOPE-2 trial of the investigational therapy CAP-1002 for treatment of people in advanced stages of Duchenne muscular dystrophy (DMD). The primary and secondary endpoints of the study, the improvement of upper limb and cardiac function, were met, . . .

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Improving Air Travel for People Living with a Disability

Broken wheelchairs. Inaccessible seating. Hard to navigate aircraft. For too many in the neuromuscular community, traveling by air is not accessible. We sat down with Paul Melmeyer, MDA’s VP of Public Policy and Advocacy to hear about his recent appointment to the Air Carrier Access Act Advisory Committee and the Association’s work on accessible air . . .

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Research Study Alert: Survey for Caregivers of Individuals with SMA about Communication Abilities

Researchers at Russell Sage College are seeking parents or legal guardians of individuals with spinal muscular atrophy (SMA) to participate in a survey about the communication abilities of the affected individuals. Analysis of the current communicative behaviors used by individuals with SMA will help researchers develop communication systems that better address the needs of this population. . . .

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Recognizing and Treating CMT in Kids

Like many middle-school kids, 11-year-old Callen, of Emmaus, Pennsylvania, has turned his mom, Jamie Moulthrop, into a chauffeur, she jokes. He participates in karate, baseball, hockey, and surfing, and he meets up often with friends at the pool and splashes around for hours.  Unlike the other kids around him, though, Callen has Charcot-Marie-Tooth disease (CMT), a . . .

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