Muscular Dystrophy Association Launches National ALS Awareness Campaign to Accelerate the Search for a Cure

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Building on its 75-year legacy of progress, MDA is reinforcing its commitment to the ALS community by driving momentum for treatments and expanding access to multidisciplinary care.

New York, April 29, 2025 (GLOBE NEWSWIRE) -- The Muscular Dystrophy Association (MDA) today announced the launch of its nationwide campaign focused on amyotrophic lateral sclerosis (ALS) during ALS Awareness Month in May, honoring a powerful legacy that began in the 1950s when Eleanor Gehrig, widow of baseball icon Lou Gehrig, became the organization's National Campaign Chairman. MDA is bringing together patient advocates and experts including Brooke Eby, Sunny Brous, Dr. Stanley Appel, Karen Toennis, RN, BSN, and more to share their stories. In addition, MDA is focused on the ALS Better Care Act for support of essential multidisciplinary care for people diagnosed with ALS. Partnerships with International Association of Fire Fighters (IAFF), Dutch Bros, Rawlings®, and more help drive donations for the mission. Donations may be made here.

"Eleanor Gehrig's legacy lives on through the Muscular Dystrophy Association's work to care for families and accelerate progress against ALS,” said Donald S. Wood, PhD, President and CEO of MDA. "This May, and throughout the year, we're elevating the voices of people impacted by ALS, investing in innovation, and rallying the country to join us in the urgent mission to end this disease.”

Continuing MDA's Impact and Momentum

"We're making progress through our research funding including innovative clinical trials to accelerate a cure for ALS for the tens of thousands of people living with ALS. However, more funding is crucial as ALS is a progressive neuromuscular disease that destroys muscle-controlling nerve cells called motor neurons. In ALS, motor neurons in the brain and spinal cord are affected. As these nerve cells deteriorate and are lost, they stop sending signals to muscles. In the absence of signals, the muscles they control atrophy, becoming weak and then nonfunctional,” said Sharon Hesterlee, PhD, Chief Research Officer at MDA.

For more than 75 years, MDA has led the fight against ALS, investing more than $178 million in ALS research to date and supporting families through a national network of 150 MDA Care Centers, including 47 MDA/ALS Care Centers, providing expert multidisciplinary care. Learn more about MDA's research in ALS here.

Voices of the Community

Brooke Eby, an ALS advocate and content creator with millions of social media views, will share her story to bring visibility to the daily realities of living with ALS and the importance of sustained research funding.

"ALS is not incurable - it's underfunded,” said Brooke Eby, patient advocate and social media influencer. "The work that Muscular Dystrophy Association is doing - funding research, providing care, telling our stories - it all helps move us closer to a future where people can live with ALS, not die from it.”

ALS advocate Sunny Brous, known for her powerful resilience living with ALS, will amplify the campaign to inspire action and support alongside changemakers like Dr. Stanley Appel, founder of the first ALS multidisciplinary clinic, and long-time MDA Care Center Director at Houston Methodist, and Karen Toennis, RN, BSN, a former caregiver turned clinic coordinator, reflecting on the long-term impact of MDA's clinic care. Monty Nye, retired fire fighter and MDA Specialist, will share his personal connection to ALS, in addition to Greg, U.S. Army veteran and ALS advocate, highlighting the experience of veterans living with ALS.

"ALS Awareness Month is an opportunity to focus national attention on the extraordinary work being done to end this devastating disease. By raising awareness and funding, we can inspire greater support, accelerate research, and move closer to a future where ALS no longer exists. We need everyone's help-because together, we can rid the world of this horrific disease," said Dr. Stanley Appel, Co-Director, Houston Methodist Neurological Institute and member of MDA's Medical and Scientific Advisory Committee.

These stories and more will be amplified on the MDA Quest Media platform sharing information on speech devices, accessibility, mental health, and fire fighter advocacy.

Community Education and Advocacy

MDA Advocacy has been instrumental in advancing access to care and treatments for the ALS community including its instrumental role in the passage of the ACT for ALS, which accelerates access to experimental ALS treatments and supports research. MDA also advocates for the ALS Better Care Act, intended to be reintroduced during ALS Awareness Month, which would improve access to vital multidisciplinary care for people diagnosed with ALS and would allow ALS care teams to better serve their patients and expand research and treatment opportunities. Sign up to advocate at MDA.org/Advocacy.

MDA Community Education will host a virtual learning series about ALS on May 27-28 featuring presentations on recent research, mental health, assistive technology, care options and more. Speakers will include Shafeeq Ladha, MD from the Barrow Neurological Institute, Lora Clawson, CRNP from Johns Hopkins Medicine, Monika Patel, DPT from University of California, San Francisco, as well as community advocates. This learning series is free and will include opportunities for attendees to ask questions. Register here.

MDA Community Support Groups is one of many ways people living with ALS can connect with others in a supportive, safe group setting to gather resources, interact meaningfully with others and exchange valuable information.

MDA Resource Center offers individual guidance and support for people diagnosed with ALS and their families. To speak to someone directly call 1-833-ASK-MDA1 (1-833-275-6321) or email: [email protected].

National Fundraising Partnerships

Since the first Fill the Boot drive in 1954, IAFF and affiliates across the country have raised over $700 million for MDA, playing a pivotal role in advancing neuromuscular research and care including ALS. This year, the organizations are also prioritizing research into the causes of heightened prevalence of ALS among fire fighters, who are diagnosed at twice the rate of the general population. MDA has provided resources for fire fighters here.

Dutch Bros and its customers will come together on Friday, May 16, for its annual 'Drink One for Dane' celebration to support MDA and its mission to end ALS in honor of the late Dutch Bros co-founder Dane Boersma who lived with ALS. The partnership has raised millions for ALS research.

Rawlings®, the iconic baseball brand, will partner with MDA to honor the legacy of Lou Gehrig and advance the fight to end ALS. MDA and Rawlings will launch a special campaign that connects America's favorite pastime with a cause that affects thousands of families each year around select MLB teams' recognition of Lou Gehrig Day in June.

MDA Golf, Gala, and Muscle Walk events will continue to raise awareness and funds across the country.

How to Get Involved

• Visit MDA.org/EndALSwithMDA for resources and donation opportunities
• Follow @MDAorg on social media and sharing educational and social content using the hashtag #EndALSwithMDA
• May 4 - St. Louis, MO Muscle Walk 
• May 10 - Wheaton, IL Muscle Walk 
• May 15 - ALS Community Support Group 
• May 15/16 - Mike Bellotti Toast to Strength Golf & Gala  
• May 16 - Dutch Bros' Drink One for Dane (Donate Here)
• May 22 - MDA Tampa Toast to Life Gala 
• May 27-28 - MDA Community Education ALS Learning Series  
• June 2 - MLB's Lou Gehrig Day
  • Lou Gehrig Day is recognized by MLB teams on various dates; Lou Gehrig Day partnership with Rawlings® including MDA volunteer and advocate Rhys Hoskins of the Milwaukee Brewers and more; June 1 ALS advocate Sunny Brous represents MDA at Cardinals vs Rangers Arlington, TX
• June 25 - MDA Wings Over Wall Street Gala to Benefit ALS Research

Media contact [email protected].  

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 over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. 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.

About Muscular Dystrophy Association's 75^th Anniversary

In 2025, the Muscular Dystrophy Association proudly marks 75 years legacy, impact and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors-who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building on the impact we've made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders. Learn more at MDA75.org.

Attachments

• May is ALS Awareness Month

• End ALS with MDA

CONTACT: Mary Fiance, National Vice President, Strategic Communications

Muscular Dystrophy Association

[email protected]