Advocacy in Action
Amplifying Voices for ALS Awareness and Support
Advocacy & Awareness
Our robust advocacy program aims to raise awareness about ALS and drive policy changes that benefit the ALS community. We work tirelessly to ensure that the voices of those affected by ALS are heard and that they receive the support they need from policymakers and the public.
At ALS United, advocacy is at the heart of our mission. Our dedicated members have been at the forefront of ALS advocacy for decades, playing an instrumental role in advancing critical priorities for the ALS community. Our members continue to lead the way in grassroots campaigns, legislative support, and public policy efforts to improve the lives of those affected by ALS. Here’s a glimpse into our ongoing advocacy efforts:
Grassroots Campaigns
Our members harness the power of the community to drive change. Through local and national campaigns, we amplify the voices of people living with ALS and their families, ensuring that their needs and concerns are heard by policymakers.
We actively support and advocate for legislation that benefits the ALS community. Our efforts have contributed to significant victories, including:
- ACT for ALS Act: This landmark legislation, signed into law in December 2021, has sped up the discovery of new treatments for ALS through more clinical trials and expanded access to investigational drugs.
- AMP ALS Project: Following the successful advocacy for the ACT for ALS Act, our members recently joined forces to sponsor AMP ALS. This project benefits from collaborative public, private, and nonprofit efforts to accelerate the development of effective treatments for ALS. ALS United members serve on the steering committee and working groups of AMP ALS, showcasing our dedication to collaborative efforts to end ALS.
- Veterans’ Rights: We’ve championed the rights of veterans living with ALS, ensuring that ALS is recognized as a service-connected disease, granting veterans and their survivors’ access to VA health care and disability benefits.
- Equipment Access: Legislation alone cannot address every issue. Sometimes, we must collaborate with regulatory agencies to tackle critical challenges faced by people living with ALS. For instance, we successfully worked with the Centers for Medicare & Medicaid Services (CMS) to ensure continued access to complex rehab technology wheelchairs and other essential equipment, providing the necessary support for maintaining their quality of life.
- National ALS Registry and Biorepository: This comprehensive database, managed by the Centers for Disease Control and Prevention, helps scientists understand ALS and its causes by collecting data and biological samples from people with ALS.
Get Involved
Our members' experience and dedication have driven these significant accomplishments. We invite you to join us in our advocacy efforts. Contact your local ALS United member to learn how you can get involved and make a difference in the fight against ALS. Together, we can continue to achieve remarkable victories for the ALS community.
For more information and to connect with your local ALS United member, visit the members page. Your involvement can help us create a brighter future for everyone affected by ALS.