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New Survey Data Reveals ALS Community Burdens

National Survey Exposes ALS Community’s Greatest Burdens—and Underscores the Critical Role of Advocates

Survey shows urgent need for financial relief, mental health support, in-home care, and community connection—all areas where I AM ALS delivers real, community-led impact

FOR IMMEDIATE RELEASE: Apr 30, 2025 Washington, D.C.—A new nationwide survey conducted by the leading nonprofit organization I AM ALS highlights the significant burdens faced by people living with amyotrophic lateral sclerosis (ALS), caregivers, and loved ones, while underscoring a strong call for improved services. You can view the full survey results in the white paper here. 

In late 2024, nearly 1,000 participants across the country responded to the comprehensive survey aimed at better understanding the realities of life after an ALS diagnosis. The results are a powerful testament to the community’s challenges—and its enduring hope for the future. I AM ALS publishes the results at the beginning of May, which is ALS Awareness Month. 

Widespread Challenges Across the ALS Journey

Respondents shared deeply personal insights into the top challenges they experience following an ALS diagnosis. Among the most cited were:

  • Overall financial burden of ALS (69%)
  • Expenses related to home health, equipment, and home modifications (68%)
  • Isolation from family and friends (61%)
  • Access to reliable home healthcare (60%)
  • Managing symptoms between clinic visits (59%)

Notably, over half (51%) of respondents said they struggled to find meaning or purpose after diagnosis—a stark reminder of the emotional toll ALS takes. A total of 84% of participants reported actively seeking help to cope with these challenges, highlighting a community in search of solutions, not just support.

“These results reinforce what our community knows to be true from lived experience—people with ALS and their care partners are navigating a complex, burdensome, and often lonely journey,” said Andrea Goodman, CEO of I AM ALS. “I AM ALS exists to ensure they never have to do it alone. We encourage anyone facing an ALS diagnosis to join our community and utilize our support and advocacy offerings.”

How I AM ALS Can Help

I AM ALS’s centralized support hub makes national resources available to people living with ALS and their loved ones, including:

  • Online Resource Center: Curated tool pulling together resources from around the country for navigating home care, symptom management, insurance advocacy, mental health, and more—directly aligned with the top needs cited by survey participants.
  • Connection through Community: Patient-led support groups, peer connections, peer and professional support experts, and storytelling platforms combat isolation and empower individuals to find meaning and solidarity after diagnosis.
  • Advocacy and Awareness: From expanded access to treatments to raising public awareness during ALS Awareness Month, I AM ALS drives systemic change and hope.

May 1 marks the beginning of ALS Awareness Month. I AM ALS is launching a multimedia campaign to bring more awareness to this disease, people living with it, and the resources available to anyone impacted by ALS. Learn more and take action online: www.iamals.org/als-awareness-month/ 

You can view the full white paper report from the I AM ALS survey here.