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Fighting every day to free individuals — and the families who love them — from the harmful effects of muscle-debilitating diseases so they can live longer and grow stronger

2018 MDA Clinical Conference Will Focus on Transformative Care in the Rapidly Changing Neuromuscular Disease Landscape

Leading experts in neuromuscular disease clinical care will present and exchange ideas and information March 11-14

CHICAGO, March 8, 2018 — The Muscular Dystrophy Association (MDA) will hold its 2018 Clinical Conference at the Hyatt Regency Crystal City in Arlington, Va., March 11-14. The meeting is the nation’s preeminent gathering of MDA Care Center multidisciplinary health care providers, as well as medical and scientific experts from academia, private practice, government and industry. Part of MDA’s prestigious annual conference series, the 2018 Clinical Conference reflects MDA’s commitment and efforts to enhance the communication of new research findings and information relating to the delivery of best-in-class medical care for individuals with neuromuscular disease.

“With the rapidly evolving neuromuscular disease landscape, it is critical for physicians and allied care professionals to ensure they are up to date on the latest approved and in-development therapies, standards of care, genetic-based diagnosis of disease, and guidelines for treating muscular dystrophy, ALS and related life-threatening neuromuscular disorders,” said MDA President and CEO Lynn O’Connor Vos. “Communication is key to ensuring optimal care and quality of life for individuals with these diseases, which is why MDA places a premium on convening the Clinical Conference. It provides an opportunity for the world’s top health care professionals in neuromuscular diseases to share and collaborate in ways that will help catalyze medical advances and transform the lives of the families we serve.”

The conference will draw a record-breaking 700+ attendees, and will feature more than 50 platform presentations and more than 85 poster presentations.

“Individuals with neuromuscular disease are in many cases living longer and experiencing a better quality of life, thanks to treatment advances, refined multidisciplinary care models and use of best practices,” said MDA Senior Vice President and Chief Policy & Community Engagement Officer Kristin Stephenson, MHA, J.D. “The Clinical Conference will help move science into practice by informing health care providers about new approaches to medical management, the latest updates in clinical trials, best practices to improve patient outcomes and key developments in diagnostic tools.”

Keynote Speaker Jerry Mendell, M.D., will open the conference on Sunday, March 11. Mendell is the founder of the Clinical Translational Gene Therapy Program at the Research Institute at Nationwide Children’s Hospital, and holds professorships in neurology, pediatrics, pathology, and physiology and cell biology at The Ohio State University. He is a clinician scientist, directing laboratory projects and carrying these to the bedside while caring for people with neuromuscular diseases in the clinic. He has published more than 350 articles on neuromuscular disease and authored several related books.

Flagship Initiatives
At the conference, MDA will share the latest information on several flagship programs and initiatives, including:

  • MDA National Ambassador – MDA will announce its new 2018 National Ambassador on Monday, March 12, during the opening session. As MDA’s most visible spokespeople, National Ambassadors help forge better connections between families, broaden engagement with current and new partners, deepen MDA’s reach among its audiences and champion improved services for individuals living with neuromuscular diseases.
  • MDA Registry Expansion – MDA’s U.S. Neuromuscular Disease Registry integrates clinical data from health care providers, optimizes the clinical care and management of individuals with neuromuscular diseases to improve outcomes, and helps advance drug development. On Monday, March 12, MDA will announce its strategy and plans to significantly expand the registry, called MOVR (NeuroMuscular ObserVational Research), in 2018 and discuss implications for the health care community.
  • MDA Patient Survey (MDA ONEvoice) – In early 2018, MDA conducted a nationwide survey of individuals living with neuromuscular disease and their families and caregivers to better understand the realities of living with neuromuscular disease and to identify community needs. During the conference MDA will share the survey highlights, which will help inform the greater community about the needs and gaps in support for those living with neuromuscular disease and their caregivers, and help guide MDA’s efforts, resources and programs.

Conference Highlights
The conference will cover a broad range of topics, including genetic-based diagnostics and the rise of personalized medicine; latest developments in newborn screening; best practices in disease management concerning cardiac care, physical therapy, bone health, technology and nutrition; transitioning from pediatric to adult care; augmentative communication; therapeutics and clinical trials. The full conference agenda is available on the MDA website at: https://www.mda.org/conferences/2018-clinical-conference/agenda.
 

About MDA
MDA is leading the fight to free individuals — and the families who love them — from the harm of muscular dystrophy, ALS and related muscle-debilitating diseases that take away physical strength, independence and life. We use our collective strength to help children and adults live longer and grow stronger by finding research breakthroughs across diseases, caring for individuals from day one and empowering families with services and support in hometowns across America. Learn how you can fund cures, find care and champion the cause at mda.org.

Contact
Roxan Triolo Olivas
MDA Vice President
Public Relations and Community Programs
520-529-5305
rolivas@mdausa.org

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