The Muscular Dystrophy Association (MDA) announces 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.
Community Education Events
- 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. Sponsored by Alexion, Amylyx, Apellis, and Biogen.
- 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. Sponsored by 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.
- 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 15th 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. Sponsored by Mitsubishi Tanabe Pharma America and CITGO.
- 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.
- 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.”
— Donald S. Wood, PhD, President and CEO of MDA
“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. 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.”
— Dr. Matthew B. Harms, MDA Medical Consultant and Associate Professor of Neurology at Columbia University
[Source(s): Muscular Dystrophy Association, PR Newswire]