Progress in Motion: MDA’s 2019 Clinical & Scientific Conference Heralds New Directions for Neuromuscular Disease Treatment

In April, MDA held its first ever combined Clinical & Scientific Conference, themed “Progress in Motion,” in Orlando Fla. Clinicians, scientists, policymakers, nonprofit, and industry leaders convened for a dynamic and informative five days in Orlando, Fla. With more than 1,200 attendees, 23 sessions, 136 presentations, and 300 posters, this was MDA’s largest conference ever. . . .

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Read the New MDA Manifesto

Not long ago, supportive care and mobility aids were all medical science could offer people living with neuromuscular disease. But the treatment and care landscapes have begun to change dramatically. Recent breakthroughs in genetic medicine, along with other discoveries, are accelerating the development of new therapies, including some that not just address symptoms but also . . .

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Biogen Releases Letter to ALS Community

Yesterday, Biogen released a letter to the ALS community regarding its experimental therapy, tofersen (formerly known as BIIB067), an antisense oligonucleotide being studied for the potential treatment of amyotrophic lateral sclerosis (ALS) in adults with a confirmed superoxide dismutase 1 (SOD1) genetic mutation, which is a subtype of familial ALS that makes up 2 percent . . .

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Muscular Dystrophy Association Bridges Clinical and Academic Neuromuscular Research for the First Time at Annual Meeting

With a laser focus on new horizons in neuromuscular research and care, the Muscular Dystrophy Association (MDA) is combining its clinical and scientific conferences for the first time, establishing a robust, state-of-the-art gathering for both clinicians and investigators from across the nation. Medical and scientific experts in neuromuscular disease from academia, private practice, government, and . . .

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Marriott International Associates Spend a Day Volunteering for MDA

To kick off 2019 National Volunteer Month, the Muscular Dystrophy Association was honored to welcome Marriott International volunteers from all over the world into our Chicago offices on Friday, April 5, as part of Marriott’s Serve 360 event. Continuing its tradition of making its communities better places to live, work, and visit, Marriott International this . . .

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Education in Your Community

At MDA, we believe in the power of community and the importance of building relationships with families going through similar experiences. We invite individuals living with a neuromuscular disease, as well as caregivers and loved ones, to attend MDA Engage educational events taking place across the country. MDA Engage Community Education Seminars are one-day events . . .

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Clinical Trial Alert: Researchers at Neurogene Seek Participants for a CMT4J Natural History Study

Researchers at Neurogene are seeking participants living with Charcot-Marie-Tooth disease (CMT) type 4J to participate in a natural history study. This study aims to better understand disease course so researchers will be able to determine clinically meaningful outcome measures for use in future clinical trials. This five-year study will consist of 10 visits (one visit every six months). . . .

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