New York, April 29, 2024 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) today announced programming and fundraising events in support of people living with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, and their families throughout ALS Awareness Month in May. As the leading organization in research, care, and advocacy for neuromuscular diseases, it has invested over $176 million in groundbreaking ALS research since the 1950s, working alongside Eleanor Gehrig, wife of Lou Gehrig. Watch the MDA ALS story here.
“Every 90 minutes, every day, every week, month, and year, someone is diagnosed with this disease, and someone else passes away from it. But numbers only tell part of the story. Behind each statistic is a person, a family, a community fighting for hope. With advancements in research and technology, we are closer than ever to understanding ALS and finding treatments, but we need your help to finish the story.” said Donald S. Wood, Ph.D., President and CEO, MDA.
MDA kicks off the 2024 ALS Awareness Month with a newly released public service announcement ‘Answering the Call’. Comprehensive ALS Awareness Month resources, featuring inspiring stories, critical research updates, and valuable advocacy tools, along with information on how you can participate are available at MDA.org/EndALSwithMDA. Donations to accelerate research, advance care, and advocate for access may be made throughout the month at MDA.org/EndALS. New resources and programming include:
- Just released At-Home PT/OT Guide for ALS, a free resource available to the community.
- Fundraising at the MDA Golf Classic (May 2)
- Offering a free MDA Virtual Learning Series (May 8 and 9) led by industry experts, which will provide relevant, up-to-date information on care, research advancements, and support for people living with ALS and their caregivers.
- Hosting the free MDA Advocacy Institute: ALS Policy Updates event (May 15) to cover the latest policy updates impacting the ALS community.
- Partnering with Dutch Bros for the 18th annual Drink One for Dane Day (May 17), during which Dutch Bros Foundation will donate funds to MDA for every drink sold. The fundraiser is in memory of Dutch Bros co-founder Dane Boersma who passed away from ALS in 2009.
- Community engagement for Lou Gehrig Day across more than 17 MLB teams (June 2)
- Hosting MDA Wings Over Wall Street Gala in NYC benefitting ALS Research (June 6) and honoring members of the ALS community.
- Sharing the ALS Educational Initiative to raise awareness and provide resources for fire fighters and their families impacted by ALS in partnership with the IAFF.
- Continued partnership with the Centers for Disease Control and Prevention to promote the National ALS Registry, the only national population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and what may cause it.
MDA is at the forefront of drug discovery, investing in research that has significant potential to alter the progression of ALS. MDA is currently funding 28 research programs worldwide that specifically focus on ALS. The research seeks to help us understand the pathology of ALS and uncover new treatments, including small molecule drugs and gene therapies. A collaboration between MDA and Mitsubishi Tanabe Pharma America, Inc. (MTPA) called ALS Go-Digital recently announced an expansion of eligibility criteria to include participants regardless of their ambulatory status. ALS Go-Digital is a remote observational research study that involves digital wearable health technologies (e.g., iPads, Fitbit, etc.) for capturing remote monitoring data that is designed to be paired with MDA’s Neuromuscular Observational Research (MOVR) Data Hub. For more information, including additional eligibility criteria for the study, click here.
“In recent years, there have been a number of new drugs approved for ALS, and MDA funding has been involved either directly or indirectly in most of those. One example is QALSODY® (tofersen), which is a drug for a genetic form of ALS; MDA funded the first clinical trial for the predecessor to that drug. One of our key areas of ALS research seeks to give us the ability to diagnose people earlier. Most people have symptoms of ALS for a year to six months before they're actually diagnosed, so if we could back up that time and start drugs and clinical trials earlier, we feel like that would have a great impact across different types of therapies in ALS,” said Sharon Hesterlee, Ph.D., Chief Research Officer, MDA.
MDA’s National Care Center Network provides unparalleled access to specialized ALS care. Each MDA Care Center is staffed by top specialists, who are experts in neuromuscular diseases, and on the cutting edge of the latest treatments and research. MDA Care Centers serve as crucial hubs for the community, offering multidisciplinary care from a team of specialists including neurologists, respiratory therapists, physical therapists, and more, ensuring comprehensive management of ALS. MDA Care Centers serve as gateways to clinical trials and research, presenting patients with opportunities to participate in the development of new therapies and advancements in ALS care.
To learn more during ALS Awareness Month, follow MDA on Instagram, Facebook, X, TikTok, LinkedIn and share #EndALSwithMDA.
MDA is grateful to our dedicated partners who make progress to end ALS possible including:
- Transformer Support provided by CITGO Petroleum Corporation, International Association of Fire Fighters, Dutch Bros Coffee.
- Visionary Support provided by Acosta Group, Albertsons Companies Foundation, Burn Boot Camp, Genentech, Harley -Davidson Motor Co., Mansfield Cares, National Association of Letter Carriers, Pfizer, QFC, Reata Pharmaceuticals Inc., Sarepta Therapeutics, Sundt Construction, Inc.
- Leadership Support provided by Biogen, Circle K South Atlantic Division, Ed Morse Automotive Group, Edgewise Therapeutics, Fareway Meat & Grocery, General Motors, Harris Teeter, Liberty Mutual, Mitsubishi Tanabe Pharma America, Price Chopper/Market 32, Sampson-Bladen Oil Company, Shaw's/Star Market.
About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, TikTok, LinkedIn, and YouTube.
Attachment
Mary Fiance, Vice President, Strategic Communications Muscular Dystrophy Association press@mdausa.org
