Strongly

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

Kids, Young Adults, Research, Living with Muscular Dystrophy

Research Study Alert: Survey for Siblings of Individuals with DMD about Disclosure and Communication within the Family

Sujatha Gurunathan

Researchers at Boston Children’s Hospital/Brandeis University are seeking unaffected siblings of boys with Duchenne Muscular Dystrophy (DMD) to participate in a survey about their perspectives on disclosure and communication within the family. The information gained from this study will be used to guide parents on how to best communicate information about DMD to their family members. . . .

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Adults, Living with Muscular Dystrophy

Alcohol and Neuromuscular Disease

Jenna Grundtner

It’s no secret that alcohol consumption can have an impact on one’s health. Some studies have shown benefits for the heart and circulatory system from moderate drinking. On the other hand, alcohol is known to depress the central nervous system and can destroy brain cells. Excessive drinking over a prolonged period of time can cause . . .

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Research

Research Study Alert: Study of New Device for use in Adolescents Living with Autoimmune Neuromuscular Conditions

Sujatha Gurunathan

Researchers at Worrell are seeking adolescents (ages 12 – 17) with the following conditions: neuromyelitis optica spectrum disorder (NMOSD), myasthenia gravis (gMG), myelin oligodendrocyte glycoprotein antibody disease (MOG-AD), or autoimmune encephalitis (AE), to participate in a research study to test the safety and efficacy of a new syringe device being developed to administer a drug to . . .

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Young Adults, Research

Research Study Alert: Survey for Young Adults with Muscular Dystrophy

Sujatha Gurunathan

Researchers at the Hospital for Sick Children in Toronto, Canada are seeking young adults living with muscular dystrophy to participate in a survey about their interest in and experiences receiving genetic information. Participants will be required to complete a 10-15 minute online survey that collects largely quantitative data, as well as some open-ended responses. After completing . . .

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Living with Muscular Dystrophy

Online Therapy and Support Groups Are Good for Your Mental Health

Cheryl Alkon

When the COVID-19 pandemic began, much of the healthcare system shifted from primarily face-to-face visits to a wider acceptance of telehealth, or virtual appointments using computers, tablets, or smartphones. Health insurers quickly pivoted to covering virtual visits, as the pandemic required social distancing. And while the pandemic will, eventually, wind down, healthcare experts believe greater . . .

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Kids, Young Adults, Adults, Living with Muscular Dystrophy

What You Need to Know About Finding and Visiting an MDA Care Center

MDA Specialist, Family & Community Support

Located at more than 150 of the top healthcare institutions across the United States, MDA Care Centers serve as the nexus for expert clinical care and medical research. Our Care Center Network offers tens of thousands of appointments each year for individuals living with muscular dystrophy, ALS, and other neuromuscular diseases. These appointments provide individuals . . .

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Research

Research Study Alert: Natural History Study in Males with BMD

Sujatha Gurunathan

Researchers at the University of Florida are seeking adult males living with Becker muscular dystrophy (BMD) to participate in a three-year natural history study. The objective of this observational study is to gain a better understanding of the course of BMD and to identify biomarkers for BMD. This study does not involve an intervention. Enrolled participants will . . .

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Research

Clinical Trial Alert: Phase 2/3 Study of Tideglusib (AMO-02) in Children and Adolescents with Congenital Myotonic Dystrophy

Sujatha Gurunathan

Researchers at AMO Pharma Ltd are seeking children and adolescents living with congenital myotonic dystrophy (DM1), also known as Steinert’s disease, to participate in a phase 2/3 clinical trial (REACH CDM) to evaluate efficacy of the investigational drug tideglusib (AMO-02) to treat congenital DM1. Tideglusib is designed to disrupt the RNA repeat that causes congenital DM1, . . .

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