By embedding patient and caregiver voices into education, advisory structures, and trial design, NEALS has helped align scientific rigor with lived experience— strengthening relevance, trust, and impact across ALS research.
Centering the ALS Community in Research
In 2011, NEALS formalized this commitment with the launch of the ALS Clinical Research Learning Institute® (CRLI) under the leadership of Dr. Richard Bedlack and Dr. Merit Cudkowicz. 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, how to critically read and interpret research , ethical considerations, and opportunities for community engagement, preparing them to
engage confidently and thoughtfully in research conversations.
Through the PCAC, individuals living with ALS and caregivers provide direct input to the NEALS Executive Committee 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.
Graduates of the CRLI program 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. This commitment to partnership is further reflected through the NEALS Patient and Caregiver Advisory Council (PCAC) .
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