ALS Advocates Drive Momentum on Capitol Hill During ALS Awareness Month

May is ALS Awareness Month, and ALS Network advocates met with members of Congress in Washington, D.C. this week, sharing personal stories and expertise to highlight how federal policies affect people living with ALS and the urgent need for continued support.

During their time on Capitol Hill, advocates pressed for action on several key priorities:

• Reauthorizing ACT for ALS
• Supporting the ALS Better Care Act
• Advancing 2027 federal funding for ALS research, care, and support programs

Advocates also urged members of Congress to join the bipartisan Congressional ALS Caucus to strengthen awareness and engagement around ALS issues.

As momentum continues to build in Washington, there has already been important progress this past week as the Senate version of the ACT for ALS Reauthorization Act has officially been introduced by Senators Lisa Murkowski and Chris Coons following the House effort led by Representatives Mike Quigley and Ken Calvert.

This marks another important bipartisan step toward sustaining programs that are accelerating ALS research and expanding access to investigational therapies for people living with ALS.

While the meetings marked meaningful progress, the work continues. Together, we will keep pushing to ensure these priorities translate into real action for everyone affected by ALS.

Even if you were not able to make it to Washington, you can still make an impact by contacting your members of Congress using the button below AND by sharing educational content on social media throughout the month of May.