ALS funding rises to $315M as advocates press Congress to reauthorize ACT for ALS

As of March 25, 2026, momentum around ALS funding has accelerated after Congress approved a budget in early February that included $315 million for amyotrophic lateral sclerosis research, the largest single federal appropriation for the disease to date.

A lifelong Illinois resident and caregiver described the personal toll of the illness: her husband received an ALS diagnosis after their 20th wedding anniversary, retired to focus on his health, and died six years later. She became his primary caregiver while their teenage children also assumed caregiving roles. The family received coordinated support from an ALS clinic and hospice team during the course of his illness.

Advocacy groups and researchers say the recent funding increase follows years of grassroots pressure. Organizations such as I AM ALS have launched initiatives — including a three-year “Push for Progress” campaign — aimed at accelerating research, expanding access to promising treatments and securing substantial federal investment. I AM ALS reports it secured more than $1.6 billion for ALS over six years and is seeking additional appropriations and policy tools.

Legislative attention is focused on the ACT for ALS program, which is due to expire in September; supporters say reauthorization would preserve expanded access programs, critical research infrastructure and roughly $500 million in related resources. Actor Eric Dane, who spoke publicly about his diagnosis in June 2025 and died on Feb. 19 at age 53, is cited by advocates as raising public awareness. Illinois residents are encouraged to contact lawmakers using a template available on the I AM ALS website.