Muscular Dystrophy Association News Research Advocacy Living with Muscular Dystrophy Fundraising & Events MDA.org Give Blog Podcast Newsletter Magazine ADULTS Alcohol and Neuromuscular Disease JENNA GRUNDTNER 12/02/2021 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 . . . Read More YOUNG ADULTS Connecting With Our Young Adults MDA SPECIALIST, FAMILY & COMMUNITY SUPPORT 12/02/2021 Here at MDA, we are working to ensure all contact information is up-to-date for those who are registered in order to serve you as well as we possibly can. If your dependent has recently turned 18, please encourage them to email our MDA National Resource Center, at resourcecenter@mdausa.org, to update their contact information and to hear . . . Read More RESEARCH Research Study Alert: Study of New Device for use in Adolescents Living with Autoimmune Neuromuscular Conditions SUJATHA GURUNATHAN 11/30/2021 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 . . . Read More YOUNG ADULTS Research Study Alert: Survey for Young Adults with Muscular Dystrophy SUJATHA GURUNATHAN 11/17/2021 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 . . . Read More KIDS How Parents Can Help Kids Prepare for Adult Life ELIZABETH MILLARD 11/15/2021 For 18 years, Linda VanVliet spent most of her non-working time taking care of her daughter, Shelby, who was diagnosed with congenital muscular dystrophy at 3 years old. (That diagnosis was later changed to titin myopathy.) Linda’s work as a school nurse also allowed her to step in quickly when Shelby needed care. “For a . . . Read More LIVING WITH MUSCULAR DYSTROPHY Online Therapy and Support Groups Are Good for Your Mental Health CHERYL ALKON 11/15/2021 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 . . . Read More KIDS What You Need to Know About Finding and Visiting an MDA Care Center MDA SPECIALIST, FAMILY & COMMUNITY SUPPORT 11/15/2021 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 . . . Read More RESEARCH Research Study Alert: Natural History Study in Males with BMD SUJATHA GURUNATHAN 11/09/2021 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 . . . Read More RESEARCH Clinical Trial Alert: Phase 2/3 Study of Tideglusib (AMO-02) in Children and Adolescents with Congenital Myotonic Dystrophy SUJATHA GURUNATHAN 11/09/2021 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, . . . Read More RESEARCH Clinical Trial Alert: Early Phase Study of SRP-9001 in Boys with DMD SUJATHA GURUNATHAN 11/09/2021 Researchers at Stanford Neuroscience Health Center are seeking 3-year-old boys living with Duchenne muscular dystrophy (DMD), particularly in California, to participate in an early phase clinical trial (a new cohort of the ENDEAVOR trial) to evaluate efficacy of Sarepta’s investigational gene replacement therapy SRP-9001 to treat DMD. SRP-9001 uses an adeno-associated virus (AAVrh74) to introduce a . . . Read More 1234NextLast Need more inspiration? Sign up for MDA news & updates. First Name Last Name Email CONNECT WITH MDA Muscular Dystrophy Association National Office 161 N. 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