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Muscular Dystrophy Association Announces Community Education & Fundraising Events To Find a Cure for ALS

NEW YORK, NY -- April 26, 2021 – The Muscular Dystrophy Association (MDA) today announced programming and fundraising events in support of people living with Amyotrophic Lateral Sclerosis (ALS) throughout ALS Awareness Month in May, and participation in Major League Baseball’s designation of Lou Gehrig’s Day on June 2, in the effort to cure the disease. Watch the MDA ALS story here.

Community Education events include:

• May 6, 3pm ET – Facebook Live @MDAorg featuring Dr. Matthew B. Harms, MDA Medical Consultant and Associate Professor of Neurology at Columbia University, and Dr. Sabrina Paganoni, Co-Director, MGH Neurological Clinical Research Institute (NCRI), answering questions from the ALS community and providing updates in research, care and COVID-19 vaccines. Read more here.
• May 12 & 13, 3-6pm ET – MDA Engage ALS Disease Symposium featuring expert presenters on ALS therapy development, clinical trial updates, clinical management best practices and genetics. Thanks to our sponsors Alexion, Amylyx, Apellis, Biogen, Cytokinetics.
• May 20, 7-8pm ET Wings Over Wall Street, Unlock the Cure for ALS Virtual Summit with ABC Eyewitness News Anchor Bill Ritter, honoring the late Pat Quinn co-founder of the Ice Bucket Challenge, with experts from the ALS medical community and families. This event will also include an MDA ALS Awareness Month Auction (online May 20 through June 2). For over 20 years, MDA’s Wings Over Wall Street committee has been fundraising for research to Unlock the Cure for ALS. This year’s event will be a thought leadership summit that will highlight the pipeline of promise for new treatments and ultimately a cure for ALS. Guest speakers include Dr. Merit Cudkowicz, Dr. Sabrina Paganoni from Massachusetts General Hospital; Dr. Neal Shneider from Columbia University Hospital; Dr. Stanley Appel from Houston Methodist Neurological Institute; Dr. Terry Heiman-Patterson from Temple University School of Medicine; Dr. Gustavo Suarez Zambrano, Mitsubishi Tanabe Pharma America; Warren Schiffer, co-founder of Wing Over Wall Street; and Jon Najarian from Najarian Advisors and Najarian Family Office. For more information and to register click here. Thank you to our presenting sponsors IEX and Mitsubishi Tanabe Pharma America.
• May 24, 4pm ET - MDA Advocacy Institute Webinar on the ACT for ALS, a piece of legislation that would speed up development and access to potentially lifesaving ALS therapies. The webinar will feature Paul Melmeyer, MDA’s Vice President, Public Policy and Advocacy, and other ALS issue experts. To register for the event, click here.

Fundraising events include:

• May 1, 2, Harley-Davidson Owners Group, Ride for Life
• May 6, MDA ALS Golf Classic, AZ Biltmore Golf Club, Presented by Desert Financial Credit
• May 14, Drink One for Dane with Dutch Bros – this year marks the 15^th annual Drink One for Dane event with our partners at Dutch Bros. Details to be announced May 11. Proceeds from each drink sold at 400 locations in ten states will go towards ALS research and services in honor of the late Dane Boersma, who founded Dutch Bros with his brother Travis in 1992. Dane passed away from ALS in 2009. Dutch Bros and the Boersma family started Drink One for Dane to increase awareness and support research to find the cause, treatments, improve care and find cures for the disease. For more information visit dutchbros.com/endals.
• May 1 through May 31, MDA’s Team Momentum – Movement Month -- A full month of movement to benefit people living with ALS, muscular dystrophy and related neuromuscular diseases. MDA will host daily activities such as International Association of Fire Fighters Fitness Fridays and challenges to keep everyone moving and fundraising throughout the month. World ranked disabled golfer, Keegan Kilroy, who lives with limb-girdle muscular dystrophy, and his fiancée Sarah Smith, from an ALS family, will host events throughout the month. To learn more, click here. Thank you to partners Mitsubishi Tanabe Pharma America and CITGO for making the month of Movement possible.
• May 22, begins at 11am ET – Make Your Move Day is a day-long celebratory 24-hour event encouraging participants to host DIY fundraising activities including walks, runs, rolls or bikes​. Over the span of the day, MDA will livestream movement programming including accessible yoga, running and other workouts featuring special guests, including an exclusive Burn Boot Camp class with founder Devan Kline. Register and learn more here.
• May – Throughout the month of May, nationwide, our partners at the IAFF continue to Fill the Boot for ALS. Watch here.
• June 2 – MDA will join in Major League Baseball’s designation of Lou Gehrig’s Day with all teams raising funds for ALS organizations. In the early 1950s, Eleanor Gehrig came to the MDA to help raise awareness and funds to discover a cure for ALS, the disease that took her husband, baseball Hall of Famer Lou Gehrig. Since then, MDA has contributed over $1 billion to research to find cures for neuromuscular diseases including ALS and to provide care for people diagnosed with ALS and their families at MDA Care Centers nationwide. You can watch the story here, and see the current impact here,
• Donations to MDA for ALS research and care may also be made here.

"Not many people know that MDA started funding research into ALS with Eleanor Gehrig, wife of Lou Gehrig, back in the 1950’s. And for 70 years, our support of research and patient care in ALS has been unrelenting. Today, there is a network of MDA ALS Care Centers that criss-cross the nation where patients and families can find the most advanced care in the world. But it’s not enough. We have much more to do in finding effective treatments and one day, a cure. The more public support and awareness we can raise through our efforts in collaboration with the entire ALS community, the more progress we will make toward finding that cure,” said Donald S. Wood, PhD, President and CEO of MDA. “Until that day is reached, we will continue our efforts on behalf of the more than 30,000 people diagnosed with ALS or, as it was known 70 years ago, Lou Gehrig’s disease."

“This is an unprecedented time in ALS research as two decades of genetic investigations have identified many of the key pathways leading to ALS. Many of the drugs being studied today are designed to target these dysfunctional pathways,” said Dr. Matthew B. Harms, MDA Medical Consultant and Associate Professor of Neurology at Columbia University. “At this moment there are more clinical trials for ALS than I’ve ever seen, with more drugs waiting in the wings. A key limitation to bringing them forward is the funding needed to staff the trials.”

Research Grants

In partnership with the ALS Association and ALS Finding a Cure, MDA recently announced an additional $1.1 million grant in supplementary funding to leading investigators at the Houston Methodist Neurological Institute and Massachusetts General Hospital for promising research into cell therapy that could slow the progression of ALS. These organizations originally provided $2.4 million in initial funding for this research study led by Dr. Stanley Appel at Houston Methodist and Dr. James Berry at Massachusetts General.

In 2020 MDA had 45 active ALS grants with funding of more than $2 million; over the past five years, MDA has invested $17 million, funding ALS research grants and contributed over $170 million since its inception. MDA funds a network of over 2,400 clinical providers at over 150 MDA Care Centers, providing multi-disciplinary medical care nationwide and extending life. MDA also offers free educational seminars for individuals, their families, and caregivers. In addition, MDA’s Resource Center and mentor program provide guidance and support, so no one goes through their journey alone.

ALS was one of four diseases collected in MDA’s pilot registry, the US Neuromuscular Disease Registry, beginning in 2013. Valuable clinical data from participants with ALS continues to be collected in the neuroMuscular ObserVational Research (MOVR) study, an enhanced database with the ability to aggregate additional datasets to provide a first-of-its-kind data hub with the goal to improve health outcomes and accelerate drug development. As of April 2021, there are 2,016 ALS participants in MOVR across 28 MDA Care Centers.

ALS Advocacy

MDA’s Advocacy work includes urging the Federal government to invest in ALS medical research at the National Institutes of Health and Department of Defense, and advocates for public policy that makes health care access affordable, accessible and adequate. In 2020, MDA supported the Congressional passage of a bill that allows those with ALS to access Social Security Disability Insurance benefits immediately.

MDA also calls for heightened urgency in accelerating therapeutic development for those with ALS and supports lawmakers passing ACT for ALS in collaboration with the ALS community. MDA continues its efforts in encouraging the Food and Drug Administration to act flexibly and expediently in reviewing and approving new therapies for ALS, and is proud to participate in the Duke-Margolis efforts to accelerate therapeutic development in ALS, calling for actionable steps forward from this initiative. The public can join MDA’s advocacy efforts by signing up here.

ALS Community Education Materials

MDA offers a variety of educational materials available for individuals living with ALS, their caregivers, and families, including an ALS Fact Sheet. For more information, on MDA’s impact on ALS click here,

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.