Centering the ALS Community in Research
A defining evolution in NEALS’ work has been the intentional integration of people living with ALS and their caregivers into every stage of the research process. NEALS believes that the most effective and meaningful research is shaped not only by scientific expertise, but also by the lived experience of those directly affected by the disease.
In 2011, NEALS formalized this commitment with the launch of the ALS Clinical Research Learning Institute® (CRLI). Designed as a two-day educational program, CRLI equips individuals impacted by ALS with a deeper understanding of
clinical research and the therapy development process. Participants learn about study design, data and outcomes, ethical considerations, and opportunities for community engagement, preparing them to engage confidently and thoughtfully in research conversations.
Graduates of CRLI become ALS Research Ambassadors, applying this knowledge well beyond the classroom. To date, hundreds of Ambassadors have gone on to serve on advisory boards, research panels, and committees – working alongside investigators to shape trial design, feasibility, and priorities across the ALS research landscape.
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This commitment to partnership is further reflected through the Patient and Caregiver Advisory Council (PCAC). Through the PCAC, individuals living with ALS and caregivers provide direct input to the NEALS Executive Community on research priorities and community needs, ensuring that NEALS’ work remains grounded in real-world experience and aligned with what matters most to the ALS community.
Along with the PCAC, the Clinical Trial Liaison strengthens this connection by supporting individuals and families as they navigate research opportunities and resources; helping connect people living with ALS to trials, education, and support across the network.
