Seeking to harness ‘real momentum’ is goal of this year’s ALS Awareness Month
Advocacy organizations leading the way with education, fundraising events
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- May is ALS Awareness Month, when the focus is on education, advocacy, and fundraising for research advancements.
- This year, organizations in the U.S. and worldwide are highlighting recent scientific progress, new therapies, and the need for funding and legislative support.
- Events like the "Walk to Defeat ALS" and Lou Gehrig Day aim to raise awareness and support for people with the progressive disease.
May is ALS Awareness Month, and in the U.S. and around the world, organizations are educating, sponsoring events, and encouraging the community to join them in taking action, providing financial support, and pushing for better access to care through advocacy for those living with amyotrophic lateral sclerosis.
The Muscular Dystrophy Association (MDA) is educating the public on the scientific progress made to date in understanding ALS, also known as Lou Gehrig’s disease after the famed New York Yankees baseball player. The MDA is also highlighting the therapies being developed and tested, and the overall improved quality of life for patients living with this disease.
“Over the past decade, ALS has moved from almost no options to real momentum and growing hope,” Sharon Hesterlee, PhD, president and CEO, MDA, said in an association press release. “Scientists now know ALS is not one disease, but many, leading to treatments that can slow progression for some patients.”
According to Hesterlee, that momentum is continuing.
“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,” Heseterlee said.
Amplifying the voices of ALS patients and their families is central to the MDA’s mission during awareness month. This year, three new MDA Ambassadors living with ALS are sharing their personal stories.
One of them, Monica Torres, a 42-year-old mother of six who is pursuing a graduate degree in criminal justice, is not allowing her ALS diagnosis to keep her down. She maintains her drive, strength, and commitment to live a meaningful life with her family, as she shares in a video story.
Advocates: Research advances, funding still needed
Bryan Traynor, MD, is the recipient of the MDA’s 2026 Breakthrough Prize in Life Sciences, presented at the recent MDA Clinical and Scientific Conference.
“ALS research is shifting from reacting to symptoms to identifying the disease earlier and targeting it more precisely,” Traynor said.
The community can view Traynor’s video presentations, titled New Momentum in ALS Research, and A Pivotal Moment for ALS Research online. In 2025, the MDA funded nearly $2 million in ALS grants; the nonprofit is currently funding 27 active ALS research projects.
The MDA is urging Congress to pass two pieces of legislation, the ACT for ALS Reauthorization and the ALS Better Care Act. Together, they can provide access to specialized care, support for critical trials, patient and family programs, and Medicare coverage for essential ALS-related services. Advocates are encouraged to send letters of support for both pieces of legislation.
To learn more about the steps the community is taking to get the ACT for ALS Reauthorization passed, advocates can attend a webinar hosted by Paul Melmeyer, the MDA’s executive vice president for public policy and advocacy, on May 18 at 12 noon EST.
In addition, two free educational programs are being hosted by the MDA in which experts in the field will discuss and answer questions from people living with ALS and their caregivers.
The first program, Spotlight on ALS is covering topics related to dealing with symptoms, psychological issues, access to resources, and more on May 26. The second, New Frontiers in ALS Research, can be viewed on demand starting May 29 and covers the latest advances in ALS research, diagnosis, genetics, and environment.
Superhero, golf events aim to put the fun in fundraising
Fundraising events nationwide, including the Walk to Defeat ALS, the 2026 ALS SuperHero 5K/10K Dash, and the MDA Golf Classic, offer opportunities to raise money, connect with others, and have some fun.
The Fill the Boot Campaign, a partnership with the International Association of Fire Fighters and the MDA that has spanned more than seven decades, continues to raise awareness and resources for firefighters. Data suggests a firefighter’s risk of ALS may be twofold higher than that of the general population.
Legacy gifts are a great way to leave a lasting impact, advocates say. Richard Govoni gifted more than $300,000 to the MDA in honor of his wife, Susan, who died from the disease. The donation will support ALS research.
Inspired by Govoni’s gift, Brooke Eby, who has ALS and founded ALS Together, has a fundraising message posted on social media platforms, including Instagram and Facebook, encouraging others to help her match his gift.
The 26th annual MDA Wings Over Wall Street Gala to benefit ALS research will take place June 4 in New York City. This year, the gala is honoring former NFL player Tim Green, who has ALS, and Merit Cudkowicz, MD, executive director of Mass General Brigham Neuroscience Institute. The IEX Exchange will also be honored for its leadership in advancing ALS research.
During awareness month, the community is encouraged to follow the MDA on all its social media platforms using the hashtag #EndALSwithMDA.
ALS Association, ALS Network seek to up involvement
The ALS Association is marking the month with an emphasis on its “Accelerate the Cure” research campaign, encouraging supporters to donate during awareness month. The first $150,000 raised will be matched to help reach the $1 million goal. Every dollar raised will fund research aimed at improving ALS care and finding a cure, the association stated.
“Your donations make breakthrough research possible,” Brian Frederick, chief marketing officer of the ALS Association, said in an association press release sent by email to ALS News Today. “Every contribution advances work to understand and treat ALS — giving people more time, more independence, more moments with the people they love.”
ALS doesn’t define what’s possible; our community does. … We’re showing up with collective strength, resilience, and purpose to elevate community-based care, enact life-changing federal legislation, and drive breakthrough global research.
The ALS Network is also offering a number of ways to get involved this month, including attending several events through which participants can connect, support, and chat, as well as engage in physical activities.
“ALS doesn’t define what’s possible; our community does. At the ALS Network, we’re showing up with collective strength, resilience, and purpose to elevate community-based care, enact life-changing federal legislation, and drive breakthrough global research,” Sheri Strahl, the ALS Network’s president and CEO, said in an emailed statement to ALS News Today.
Lou Gehrig Day by Major League Baseball slated for June 2
I AM ALS is holding the 5th annual I AM ALS Community Gathering & Awareness Event May 6-9 in Washington, D.C. More details and registration for the event are available online. During the gathering, more than 6,000 flags will be displayed on the National Mall, each one honoring an ALS patient, living or deceased.
With its “All In for ALS Awareness” campaign, Target ALS aims to bring ALS to the forefront of the public’s attention. Suporters are encouraged, as the campaign’s name suggests, to go all in for the ALS community by sharing their stories, supporting research, and taking part in fundraising events.
For baseball enthusiasts, the 6th annual Major League Baseball (MLB) Lou Gehrig Day will be held June 2. The date was chosen to honor the ballplayer, as it’s also the day he became the first baseman for the Yankees in 1925, and the day he died in 1941 from ALS complications.
All 30 teams, including players, coaches, and managers, are honoring the Hall of Famer by wearing 4-ALS patches on their uniforms. Individuals with ALS and their families are attending several different stadiums across the country, with a goal of raising awareness and funds.
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