In order to make ALS a livable disease and ultimately find a cure, it’s going to take people living with ALS, their caregivers, family members and loved ones across the country coming together to pursue public policies that help discover new treatments, empower people living with ALS to live life on their own terms and help reduce harms associated with the disease.
In the past 12 months, ALS advocates have seen a number of public policy wins, including:
- Passage of the Accelerating Access to Critical Therapies (ACT) for ALS Act, which established two new grant programs to fund expanded access in certain circumstances for individuals not otherwise eligible for ALS clinical trials and to fund an FDA research program to find treatments and a cure for ALS and similar diseases.
- Increased federal funding for ALS research.
- Pushing the FDA to fast-track its review of AMX0035, a new treatment shown to be safe and effective.
We empowered advocates to send more than 41,000 messages to Congress and hold more than 530 meetings with lawmakers last year pressing for our public policy priorities.
But our work is not done. Next month, hundreds of advocates will convene at our National ALS Virtual Advocacy Conference to discuss our priorities and take action to advance public policy that will help move us forward in the fight against ALS.
Together we can create a world without ALS. Join us and register today at ALSAdvocacyConf.org.
To continue to learn more about ALS and follow stories from people in the ALS community, follow our blog at als.org/blog.