Advocacy Action Center

Katie Adams is a 39-year-old single mother who was recently diagnosed with ALS. She's also an ALS advocate.

Become an Advocate

What does it mean to be an ALS advocate?

ALS advocates use their voices and experience to inform legislators about the critical needs of people living with ALS, their families and caregivers. As an ALS advocate, you can build relationships with your lawmakers that can help advance legislation, create and improve policies, and change laws to help the thousands of people living with ALS.

When we join together as ALS advocates, we can make real change happen.

If you have a passion for sharing your story, empowering others, and making sure your voice is heard, sign up to become an ALS advocate today.

Sign Up

Meet Locally with Your Legislators

One of the most effective ways to influence the legislative process and build relationships with your members of Congress is to meet with them during a congressional recess. Several times throughout the year, Congress recesses and representatives return to their home states and districts to meet with constituents. This provides ALS advocates the perfect opportunity to educate legislators about the needs of people living with ALS and advocate for our legislative priorities.

We’ve created a comprehensive toolkit which includes all the resources you may need to help you plan and lead impactful meetings with your members of congress. 


Explore the Many Ways YOU can Take Action Today

group of advocates

Participate in our Action Alerts

Stay up to date with the latest issues and simple actions you can take to help fight for the ALS community.

Group of advocates in front of U.S. capitol

Find Your Elected Officials

Learn more about your legislators, the issues they support, and how you can contact them directly.


Share an Interaction with Us

Logging your interactions with elected officials is critically important to ensuring our advocacy strategies are based on the most up-to-date information.

Two girls with represenative

Share a Legislator Relationship with Us

Logging relationships or connections you have with elected officials will enable us to continue providing highly impactful advocacy engagement opportunities.

Mary Johnson

Familial ALS: My Family’s ALS Story

Mary Johnson has lost 16 members of her family to a genetic form of ALS. Today, she is a staunch advocate, sharing her family’s story with legislators and fighting for change for the ALS community. Read her story.

Whether as a person living with ALS or as a caregiver or loved one to someone living with the disease, sharing your story can help others in the ALS community and beyond feel connected to the impact ALS has on the people it touches.

Share Your Story


Follow ALS News

Stay up to date each week with all the latest news and stories from the ALS community.

Learn More

Advocates in front of capitol building

Advocacy Resources

We have tools and resources you can use to be an effective advocate all year long.

Learn More

Your support helps accelerate research, advocate for policy change and provide critical care for families impacted by ALS.
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