Have you been or are currently enrolled in any of the ACT for ALS expanded access programs? Have you been waitlisted or rejected from any of them? If so, we need to hear from you.
ACT for ALS (A4A) brought more Federal research dollars into ALS by creating a new Federal grant for scientific research through expanded access programs (A4A EAP) for individuals who do not qualify for clinical trials. These Federally funded expanded access programs provide people living with ALS the opportunity to have access to investigational therapies, but only if they do not qualify for current clinical trials.
Unfortunately, A4A ends September 30, 2026. The ALS community once again will have to advocate to get this invaluable bill through Congress and onto the President’s desk.
I AM ALS is getting ready for all of this legislative action. But we need you!
One of the most important steps is collecting the experiences of people who have enrolled in an A4A EAP. If you are living with ALS and have been enrolled in an A4A EAP or are a caregiver/loved one of someone who has, please share your story.