Day of Action on May 22 Highlights Need for Visibility of ALS

May is Awareness Month for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease

WASHINGTON, May 20, 2025 /PRNewswire/ -- In honor of ALS Awareness Month, I AM ALS is rallying the nation on Thursday, May 22 for a Day of Action to shine a light on the devastating realities of Amyotrophic Lateral Sclerosis (ALS), amplify the voices of those affected, and galvanize Americans around our urgency for change.

The theme "ALS is here, but so are we" invites advocates, families, and allies to share their powerful stories and take personal actions to build awareness, connection, and hope.

Ways to Participate on May 22:

• Submit an Op-Ed: Use I AM ALS's easy-to-use op-ed template and guidance to submit your story to your local/regional media outlets.
  
  
• Amplify on Social Media: Change your profile photo to the campaign image, and post your story, photos, or videos using the hashtags #ALSisHere and #SoAmI. Tag @iamalsorg to help spread the message even further.
  
  
• Tell Your Story: Share how ALS impacts your life—focus on one real, raw, and resonant aspect. Encourage friends and family to do the same.
  
  
• Educate Your Community: Spread key facts using these graphics about ALS to raise awareness.
  
  
• Support the Cause: Encourage donations to iamals.org/give, and promote I AM ALS' Congressional funding priorities.
  
  
• Be Bold: Whether it's dyeing your hair blue or hosting a local film screening (learn more about how to host a screening of "For Love & Life" here), creative and courageous acts are welcome and celebrated.

"On May 22, we're asking people everywhere to stand with us, speak out, and show up," said Andrea Goodman, CEO of I AM ALS. "ALS is here, but so are we. We are storytellers, visionaries, advocates, and dreamers—and we're not going anywhere. This Day of Action is about community, truth-telling, and visibility."

ALS, otherwise known as Lou Gehrig's disease, is a progressive and 100% fatal neurodegenerative disease that affects nerve cells (neurons) in the brain and spinal cord, leading to muscle weakness, paralysis, and eventually death. Approximately 6,000 people in the U.S. are diagnosed with ALS every year. It is projected that the number of ALS cases worldwide could increase by almost 70% by 2040 (source).

About I AM ALS
I AM ALS is a nonprofit organization leading what STAT News called the most successful patient advocacy campaign this century. We built a community movement to harness collective power and find treatments and a cure for ALS faster, while also creating lasting, systemic change. Our focus is on three areas:

• Advocating for federal policy change to drive research, support, and treatments for ALS.
• Improving quality of life by providing volunteer and support opportunities to advocates and people living with ALS.
• Mobilizing and empowering advocates to raise awareness about ALS and other neurodegenerative diseases, and increase visibility of the ALS experience.

Learn more at www.iamals.org.

SOURCE I AM ALS