The Inaugural Veterans Clinical Learning Research Institute (CRLI) was held May 2-3, 2025!

This event was a collaboration between the Veteran ALS Action Committee, the Northeast ALS Consortium (NEALS) and the ALS Hope Foundation. The CRLI is an intensive 2-day program dedicated to educating attendees on the clinical research process, therapy development, the treatment landscape and advocacy to empower them to be advocates for ALS clinical research. This program was conceived by Dr. Richard Bedlack and championed by Dr. Terry Heiman-Patterson who has brought several CRLIs to the Philadelphia region. This year, Veterans living with ALS, caregivers and surviving family members were invited to participate in this new program and graduate as Research Ambassadors and ALS advocates.

The conference was free to participants, and brought in leading clinicians and researchers in ALS, with a focus on research and care for veterans. The goal of the program was to educate the participants and arm them with the tools to share this knowledge about clinical trials, current treatments, and methods for advocacy. Though some of the topics were scientifically (or statistically) complex, complete with unfamiliar acronyms, the presenters were effective in presenting analogies, answering questions and even supporting each other's presentations with further elaboration. It was amazing to have such close access. The group also carefully and critically read a published research paper and together uncovered serious flaws in the methodology and conclusions. It was a practice in distinguishing between false hype and authentic hope. The final presentations were from Allison Bulat and a panel from the VAAC who shared not only their stories, but ways in which people could individually and collectively pursue advocacy goals.

At the conclusion of this CRLI, the participants earned their certificates as ALS research ambassadors and left with a deeper understanding of the research landscape in ALS and the unique opportunities and challenges for our Veterans. But more importantly, everyone left the conference with new friendships and a renewed commitment to advocate for the multiple issues that the ALS community and ALS veterans face.