Aim this ALS Awareness Month is to amplify community voices
Advocates speaking out in support of care, research and hope
Across the U.S. and around the world, the amyotrophic lateral sclerosis (ALS) community is aiming to raise its voice in powerful ways this May during awareness month — with advocacy campaigns, flag displays, the sharing of personal stories, and community-led events.
ALS Awareness Month, according to supporters of those with the neuromuscular condition, is an opportunity to shine a light on the lives touched by ALS and to advance efforts to improve care, fund research, and bring hope to those living with the disease.
“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,” Donald S. Wood, president and CEO of the Muscular Dystrophy Association (MDA), said in a press release from the nonprofit, which supports people living with muscular dystrophies, ALS, and related diseases.
MDA awareness campaign seeks to drive access to care
This year’s MDA campaign — which the nonprofit says is “building on its 75-year legacy of progress” — has as its focus advancing treatments for neuromuscular diseases such as ALS, and highlighting partnerships, ongoing research, and the importance of multidisciplinary care for people living with the condition.
At its center is amplifying the voices of the ALS community, including advocates Brooke Eby and Sunny Brous, as well as medical experts like Stanley Appel, MD, a leader in ALS care.
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.
These advocates and professionals are sharing personal stories to raise awareness of the need for continued research funds and better care options for those affected by ALS.
“ALS Awareness Month is an opportunity to focus national attention on the extraordinary work being done to end this devastating disease,” said Appel, the codirector of the Houston Methodist Neurological Institute and a member of the MDA’s medical and scientific advisory committee.
“By raising awareness and funding, we can inspire greater support, accelerate research, and move closer to a future where ALS no longer exists,” Appel added.
In line with the campaign’s goals, the MDA is spotlighting its work to pass the ALS Better Care Act, which would improve access to essential care for those diagnosed with ALS. The MDA has already been instrumental in the passage of the ACT for ALS, which supports ALS research and accelerates access to promising experimental treatments.
Throughout ALS Awareness Month, the MDA will host a virtual learning series featuring leading experts to provide the latest updates on ALS. There are also several MDA golf, gala, and muscle walk events taking place in May that will aim to raise funds and awareness for the cause.
ALS Association launching new Ice Bucket Challenge
For its part, the ALS Association is seeking to build on the momentum sparked by the Ice Bucket Challenge launched more than a decade ago. That initiative, which brought international attention to the disease, has now been renamed the #SpeakYourMIND Ice Bucket Challenge to support mental health changes.
This May, the organization is joining forces with Active Minds and encouraging people to raise their buckets again, or for the first time, to mark both ALS Awareness Month and Mental Health Awareness Month.
“The Ice Bucket Challenge is a cultural phenomenon that has changed the fight against ALS forever,” Calaneet Balas, president and CEO of the ALS Association, said in a press release from the nonprofit, which offers local support to patients, among other efforts.
“It led to the discovery of new ALS genes, launched global research collaborations, and expanded care for people living with ALS,” Balas said. “At the same time, it showed how grassroots action can transform health outcomes — and we’re pleased to see that same energy now being used to advance mental health awareness, as well.”
The new challenge has already raised more than $400,000 toward its $500,000 goal.
Other ALS Association awareness month activities include Walk to Defeat ALS events, golf tournaments, galas, and the CEO Soak challenge, where local leaders get doused in support of the cause.
The association also is calling for federal lawmakers to protect funding for ALS research. People affected by ALS, their families, and caregivers are encouraged to share their stories and advocate for change.
Flag display tour will mark ALS Awareness Month
On May 10, the community-led nonprofit I Am ALS will host a gathering at the National Mall in Washington, D.C., where the organization will present its annual ALS flag display.
The installation features 6,000 blue flags, symbolizing the number of people diagnosed with ALS in the U.S. every year. The display honors those living with the disease, those who have died, and those who carry ALS-associated genes.
This year, I AM ALS is adding a new element it says is aimed to deepen public connection to the cause. Volunteers, including people living with ALS and family members, will be stationed at the flags to share personal stories. The storytelling walk is designed to give visitors a more intimate understanding of the ALS community’s experiences.
Lou Gehrig Day celebrations slated for MLB ballparks
Major League Baseball (MLB) will celebrate Lou Gehrig Day on June 2, marking the fifth year of the event. The day honors Gehrig’s legacy and raises awareness for ALS. June 2 was chosen because it marks both the day he became the New York Yankees’ starting first baseman in 1925 and the day he died in 1941.
ALS is also known as Lou Gehrig’s disease after the famed Yankees first baseman, who was diagnosed with the condition at age 36.
All 30 MLB teams are expected to take part in the celebrations, with players wearing a number 4 patch in tribute to Gehrig. MLB is also continuing fundraising efforts to support ALS research and programs.
As June 2 falls on a Monday this year, when most teams are not scheduled to play, many are holding their Lou Gehrig Day events on surrounding dates. The St. Louis Cardinals, for example, will host their tribute on June 1 in partnership with MDA and the ALS Association.
Showing the ‘Faces of ALS’ this awareness month
ALS One, a partnership of ALS researchers, clinicians, and care providers, is spotlighting the personal impact of the disease this May with its “Faces of ALS – Gallery of Courage and Strength.”
Submissions to this montage — now in its 10th year — can be made online.
Running from May 1 through 31, the campaign transforms the digital space into a gallery, where the stories and portraits of those living with ALS are brought into focus. The initiative not only celebrates the resilience and determination of people facing the disease but also aims to connect the public with the human side of ALS. The goal, according to ALS One, is to foster greater understanding and support for ongoing research and care efforts.
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