Muscular Dystrophy Association Hosts Facebook Live @MDAorg on ALS Care and Research Updates
Featuring MDA Medical Consultant Dr. Matthew B. Harms, Associate Professor Neurology, Columbia University & Dr. Sabrina Paganoni, Co-Director, MGH Neurological Clinical Research Institute (NCRI) on May 6, 2021 at 3pm ET
New York, NY, April 15, 2021 –
What/Where/When: The Muscular Dystrophy Association (MDA) invites you to join a special virtual @MDAorg Facebook Live conversation on ALS (amyotrophic lateral sclerosis, aka Lou Gehrig's disease), on Thursday, May 6, 2021 at 3pm ET, focused on the progress and work to come to find a cure.
Who: This event will provide information for the ALS community, with a focus on individuals living with ALS, their loved ones, and caregivers.
Topics to be covered:
- Advancements in ALS care and research
- Discussion on the HEALEY ALS Platform Trial
- Review of ALS care best practices
- Funding needs within ALS research
- COVID-19 vaccines for the ALS community
Why: The month of May is ALS Awareness Month, and while MDA focuses on ALS all year-long, this is a special opportunity to raise awareness and report on progress to find a cure. ALS is a disease of the parts of the nervous system that control voluntary muscle movement, including breathing, walking, and talking. MDA is one of the largest funders of research and care for ALS for decades, and provides ongoing virtual programming, advocacy, resources, and facts about ALS for the public.
Dr. Matthew B. Harms is an MDA Medical Consultant, MDA Care Center Director, and the Associate Professor Neurology at Columbia University. His post-doctoral and faculty work in neurogenetics led to the discovery of genes for dominant spinal muscular atrophy and limb-girdle muscular dystrophy type 1D. He sees patients at the MDA ALS Care Center in the Eleanor and Lou Gehrig ALS Center, the Adult Muscular Dystrophy Association Clinic, the Pediatric Muscular Dystrophy Association Clinic, and until recently, the ALS Clinic of the Bronx VA Hospital. His laboratory straddles Columbia's Motor Neuron Center and the Institute for Genomic Medicine, with a focus on generating, integrating, and analyzing clinical, genomic, and transcriptomic datasets for amyotrophic lateral sclerosis and other neurological disorders.
Dr. Sabrina Paganoni, Ph.D. is an Assistant Professor at Harvard Medical School and works as a physician scientist at the Healey Center for ALS at Massachusetts General Hospital, an MDA ALS Care Center, and at Spaulding Rehabilitation Hospital. Her research focuses on developing new treatments for ALS (amyotrophic lateral sclerosis, Lou Gehrig's disease). She designed and is currently leading several ALS clinical trials that include novel endpoints and biomarkers and innovative trial designs. She is currently the co-Principal Investigator of the HEALEY ALS Platform Trial, the first platform trial for ALS in the world. She is also working with people with Primary Lateral Sclerosis (PLS), a rare form of Motor Neuron Disease, and Hereditary Spastic Paraplegia (HSP). She co-chairs the PLS Task Force and the PLS registry of the Northeast ALS Consortium (NEALS). She is working with other Harvard researchers on developing new assistive technology devices that can improve function and quality of life for people with ALS and other forms of Motor Neuron Disease.
Marydeth Guerin, MDA, Senior Director of Care Center Programs
Marydeth Guerin is MDA's Senior Director of Care Center Programs. She assumes overall leadership of MDA’s National Center Network, which is the largest network of neuromuscular clinics, providing best-in class care at 150+ of the nation’s top medical institutions across the U.S. Marydeth manages the Care Center grant award portfolios and oversees network strategy, site engagement, and implementation of the MDA Care Center Network Program, which offers 60,000+ appointments each year for individuals living with muscular dystrophy, ALS, and related neuromuscular diseases to access expert multidisciplinary care, clinical trials, and to connect with MDA and the neuromuscular community. Marydeth also serves as primary liaison with MDA's Medical Advisors and Chair of the MDA Care Center Review Committee.
About the Muscular Dystrophy Association
For 70 years, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA's MOVR is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation's top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events, and materials for families and healthcare providers. MDA Advocacy supports equal access for our community, and each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families. During the COVID-19 pandemic, MDA continues to produce virtual events and programming to support our community when in-person events and activities are not possible. MDA’s COVID-19 guidelines and virtual events are posted at mda.org/COVID19. For more information, visit mda.org.
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