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Blog Post | Health, Lifestyle

It Is OK to Have Mixed Feelings About Resuming Activities After Being Vaccinated

For more than a year we heard these messages: Wash your hands. Wear a mask. Stay six feet apart.  Now, the Centers for Disease Control and Prevention (CDC) says people who are…

Tags: COVID-19, Healthcare, Research, Resources, Staying Active


Blog Post | News, Science + Research

Clinical Trial Alert: Phase 1b/2a Study of Descartes-08 in Adults with Generalized Myasthenia Gravis

Researchers at Cartesian Therapeutics are seeking adults living with generalized myasthenia gravis (gMG) to participate in a phase 1b/2a clinical trial to evaluate safety, tolerability and manufacturing feasibility of the investigational…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Research


Blog Post | News, Science + Research

Research Study Alert: Survey for Caregivers of Children with SMA to Study Treatment Decision Making

Researchers at Michigan Medicine at the University of Michigan are seeking caregivers of children living with spinal muscular atrophy (SMA) to participate in a survey about treatment decision making. Over the…

Tags: Caregiving, Clinical Trial Alert, Parenting, Research


Blog Post | News, Science + Research

FDA approves Octapharma’s Octagam® 10% for Treatment of Adults with Dermatomyositis

On July 20, the US Food and Drug Administration (FDA) granted approval to Octagam® 10% for the treatment of adult dermatomyositis, a rare immune-mediated inflammatory disease. Octagam® 10% is the first and only intravenous immunoglobulin (IVIg) approved…

Tags: Clinical Trials, Drug Approval, Healthcare, Research, Research Advances


Blog Post | News, Science + Research

Clinical Trial Alert: Phase 3 Study of Pamrevlumab (FG-3019) in Combination with Systemic Corticosteroids in Ambulatory Boys with DMD

Researchers at FibroGen are seeking boys living with Duchenne muscular dystrophy (DMD) to participate in a phase 3 clinical trial to evaluate efficacy of the investigational drug pamrevlumab (FG-3019) in combination…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Research


Blog Post | News, Science + Research

Clinical Trial Alert: Phase 2 Study of Pitolisant for Treatment of Excessive Daytime Sleepiness in Adults with Myotonic Dystrophy, Type 1 (DM1)

Researchers at Harmony Biosciences are seeking adults living with myotonic dystrophy, type 1 (DM1) to participate in a phase 2 clinical trial and open-label extension to evaluate safety and efficacy of…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Research


Blog Post | News, Science + Research

Clinical Trial Alert: Phase 1b and Open-Label Extension Study of ASP0367 in Boys with DMD

Researchers at Astellas Pharma Inc. are seeking boys living with Duchenne muscular dystrophy (DMD) to participate in a phase 1b clinical trial and open-label extension to evaluate safety, tolerability and preliminary…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Research


Blog Post | Health

Spotting Neuromuscular Disease in Adults

After years of denial, it was the stairs to his second-floor college apartment that forced Chris Anselmo to finally face his limb-girdle muscular dystrophy (LGMD) in 2009. “I remember moving in, trying…

Tags: Healthcare, Research, Resources


Blog Post | Inclusion, Independence, Lifestyle

The Benefits of Getting Kids Involved in Adaptive Sports

When Kristine Welker’s son was young, he wanted to be as involved in sports as everyone else in the family — and that meant a high level of activity, from…

Tags: Mental Health, Parenting, Relationships, Resources, Staying Active, Young Adults


Blog Post | Inclusion, Independence, Lifestyle

Inclusion in STEM: A Discussion with General Motors

According to the National Science Foundation, individuals living with a disability, such as neuromuscular disease, are underrepresented in the fields of science, technology, engineering, and math (STEM). Yet STEM-based careers are growing…

Tags: Ambassadors, College, Education, Employment, Parenting