Muscular Dystrophy Association Marks ALS Awareness Month throughout May with Breakthrough Research, Powerful Stories, and Nationwide Call to Action to End ALS
New York, April 28, 2026 (GLOBE NEWSWIRE) -- During ALS Awareness Month this May, the Muscular Dystrophy Association (MDA) is highlighting unprecedented scientific progress, inspiring personal stories, legislative advocacy, and national partnerships driving urgency toward treatments for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Learn more and donate at MDA.org/EndALSwithMDA.
Real Lives, Real Impact
Behind every breakthrough are families navigating ALS every day. Meet some of the MDA Ambassadors living with ALS:
- Linda Rimer, from San Antonio, Texas, was diagnosed with ALS in 2017. She shows how MDA supports people with ALS through trusted information, resources, and connection during uncertain times. A nonprofit executive, world traveler, mother, and grandmother, has met her diagnosis with a focus on faith, family, and purpose—while helping raise awareness that each day can still hold meaning and hope.
- Monica Torres, a 42-year-old mother of six who recently moved from Puerto Rico to New York City, is focused on family and purpose after her ALS diagnosis. A criminal justice graduate student, she speaks out on dignity, inclusion, and accessibility. Through MDA, her family has found critical support—from a Family Getaway to Peer Connections and a Durable Medical Equipment (DME) grant—showing what real access looks like: practical help, human connection, and the ability to keep moving forward.
- Gwen Petersen, from Connecticut, was diagnosed at 32 years old after a long diagnostic journey. She’s challenging the misconception that ALS affects only one type of person, reminding us that it can impact anyone, anywhere, at any age. Her advocacy underscores the urgency of research, as treatment options remain limited.
- Watch Monica’s story here.
A Turning Point in ALS Research
At the 2026 MDA Clinical & Scientific Conference in March, Dr. Bryan Traynor, Senior Investigator, Laboratory of Neurogenetics, National Institutes of Health (NIH), shared new insights that signal a potential turning point in how ALS is understood and treated. Dr. Traynor is also a recipient of 2026 Breakthrough Prize in Life Sciences, for the discovery of the most common genetic cause of ALS and frontotemporal dementia which charted the path for new mechanistic studies of these diseases.
- Promising investigational blood test: Researchers have identified a set of plasma proteins that can detect ALS with a high degree of accuracy. While still investigational, this approach could be the first objective method to support ALS diagnosis.
- Early detection before symptoms appear: Evidence shows that disease-related changes may be detectable up to 10 years before clinical symptoms emerge. Early detection could allow patients to enter clinical trials sooner and potentially benefit from interventions before significant motor neuron loss occurs.
- Innovative therapeutic strategies: Using large-scale genomic data, researchers are identifying existing drugs that could be repurposed for ALS, helping to accelerate the development of new treatments. Additional emerging therapies, including gene-targeted approaches, are also under study.
- Broader impact on neurodegenerative disease research: Insights from ALS research are informing approaches across other neurodegenerative conditions, offering hope for progress beyond ALS.
- Watch Dr. Traynor videos:
“ALS research is shifting from reacting to symptoms to identifying the disease earlier and targeting it more precisely,” said Dr. Traynor. “Advances in biomarkers and genetics are opening the door to earlier diagnosis, more effective clinical trials, and ultimately better outcomes for patients.”
Research Momentum Continues
MDA’s ongoing investments in ALS research include:
- Nearly $2 million awarded in ALS grants in 2025
- 27 active ALS research projects
- Nearly $9 million awarded over the past five years
- Over $180 million invested in research
“Over the past decade, ALS has moved from almost no options to real momentum and growing hope. Scientists now know ALS is not one disease, but many, leading to treatments that can slow progression for some patients. With a robust pipeline of new therapies, innovative clinical trials, and advances in multidisciplinary care helping people live longer and better, the fight against ALS is changing, bringing us closer than ever to treatments that can truly alter, and one day stop, this disease,” said Sharon Hesterlee, PhD, President and CEO, MDA.
Advocacy
This ALS Awareness Month, MDA is calling on the public to take action on two critical federal priorities impacting people living with ALS—urging Congress to expand access to care, advance research, and improve quality of life.
Featuring Paul Melmeyer, MPP, EVP, Public Policy and Advocacy at MDA, and research
and drug development experts, the discussion will focus on the ALS community’s efforts
to reauthorize the ACT for ALS before the September 30, 2026, deadline, to
expand access to specialized care, support participation in clinical trials, and strengthen
programs for patients and families. Take action: Action Center.
- Urge Congress to Support and Pass the ALS Better Care Act
MDA is also urging Congress to swiftly pass the ALS Better Care Act by securing bipartisan cosponsors for this critical legislation, which would expand Medicare coverage for essential ALS-related services and significantly improve care and quality of life for people living with ALS. Take action: Send a message to your representatives today.
Community Education
MDA will host two free educational programs for people living with ALS and their caregivers:
This virtual series will offer expert-led presentations and Q&As on topics including symptom management, mental health, resources, and advocacy. It will conclude with a community panel sharing real-life experiences navigating ALS. Speakers will include experts from the Eleanor and Lou Gehrig ALS Center at Columbia University and the ALS Center of Excellence at the Hospital for Special Care.
- New Frontiers in ALS Research: Genetics, Environmental Insights, and Clinical Trials – Available to view on-demand May 29
The community is invited to learn about the newest advances in ALS research, including genetics, environmental factors, and emerging diagnostic and treatment approaches through this on-demand webinar. Presenters will include researchers from the National Institute of Aging and the ALS Therapy Development Institute.
Nationwide Fundraising Movement to End ALS
MDA is engaging communities nationwide through awareness and fundraising campaigns:
- Richard Govoni cared for his wife Susan, who passed away from ALS. After his own passing, he left a legacy gift of more than $300,000 to MDA to advance ALS research. His story now inspires others, including Brooke Eby, who is living with ALS.
- Fill the Boot Campaign – In partnership with the International Association of Fire Fighters (IAFF) for over seven decades, fire fighters nationwide raise critical funds year-round for research and care.
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- According to some studies fire fighters have a two-fold risk of ALS compared with the general population. MDA and IAFF have joined together on an educational initiative to raise awareness and provide resources for fire fighters and families living with ALS.
- MDA is also supporting the Champion Insights Study to investigate this risk, learn more here.
- 2026 MDA Golf Classic – May 7 – Dobson Ranch Golf Course, Mesa, AZ.
- Drink One for Dane Day of Giving (website to update May 1) – May 15 – This year, Dutch Bros is aiming for its biggest milestone yet: surpassing $20 million in total lifetime donations to MDA, honoring the legacy of co-founder Dane Boersma, who lost his battle with ALS in 2009.
- MDA Wings Over Wall Street Gala – June 4 – The 26th annual gala to benefit ALS research will be held in New York City honoring Tim Green, living with ALS, Dr. Merit Cudkowicz, and IEX Exchange for leadership in advancing ALS research.
Major League Baseball’s Lou Gehrig Day is June 2, 2026
The 6th annual MLB Lou Gehrig Day is scheduled for Tuesday, June 2, 2026, featuring a full slate of games to honor the Hall of Famer and raise funds for ALS research.
- All 30 teams will participate, with special "4-ALS" patches worn by players, coaches, and managers.
- MDA families living with ALS will attend with the Chicago White Sox (5/31), Arizona Diamondbacks, Milwaukee Brewers, St. Louis Cardinals, and more.
- In addition, the Boston Red Sox, Cincinnati Reds, San Francisco Giants, and the Seattle Mariners are amplifying MDA’s mission to end ALS.
MDA Resource Center Offers 1:1 ALS Support
During ALS Awareness Month, MDA reminds families they don’t have to face ALS alone. The MDA Resource Center provides personalized guidance via phone or email, connecting people to disease information, resources, families in their area, and MDA’s specialized ALS Care Centers nationwide. Call or email: 1-833-ASK-MDA1 or email ResourceCenter@mdausa.org. Learn more here.
Social Media
Throughout ALS Awareness Month, follow MDA on social media on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube using #EndALSwithMDA.
Media contact press@mdausa.org.
About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) has been at the center of progress for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions for 75 years. We unite researchers, clinicians, advocates, and families to speed the pace of discovery, improve access to expert care, and ensure inclusion in every aspect of life. Our mission is simple: give the people we serve the tools and opportunities to live longer, more independent lives. To learn more visit mda.org. Follow MDA on social media on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube.
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Mary Fiance, National Vice President, Strategic Communications Muscular Dystrophy Association press@mdausa.org
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