Veteran ALS Action Committee (VAAC)
Who is the VAAC?
The Veteran ALS Action Committee is a team comprised of foundation members, advocates, caregivers, & Veterans living with ALS. The VAAC is dedicated to increasing Veteran awareness of and participation in clinical trials and research through education and outreach.
Our Goals
Awareness
Raise awareness of clinical trials and research opportunities that are available to Veterans impacted by ALS.
Education
Educate Veterans and healthcare providers on the clinical trial process and the roles that each person plays.
Collaboration
Bridge the gap between the clinical trials world and Veterans to create positive change in the ALS community.
WEBINARS
UPCOMING: “Accessing Caregiver Benefits & Resources”
Thursday, June 18th at 7:00 PM (EST)
ALS is a 100% service connected disease, which means that Veterans and their caregivers are eligible for certain benefits and resources through the VA. The VAAC wants to ensure that all caregivers of Veterans impacted by ALS know what help is available to them.
Join the Veteran ALS Action Committee as we discuss these benefits with ALS Care Coordinator Leah Darling and PVA Representative Scott Bushorn.
“Observational Trials” Webinar
The “Observational Trials” webinar was held on February 26th, 2026. The discussion focused on clinical trials and natural history studies, the ALL ALS “All In ALS” Program, and perspectives from researchers, clinicians, and participants. Click the button below to view the recording.
Passcode is: 02@0M0gU
“Introducing & Exploring ALS VA Handbook” Webinar
The “Introducing & Exploring the ALS VA Handbook” webinar was held on November 20th, 2025. The discussion reviewed the ALS VA Handbook with contributions from Dr. Ileana Howard and Ms. Leah Darling. Click the button below to view the recording.
Passcode is: @Uv5UqxT
PUBLICATIONS
International Symposium on ALS/MND Posters
The VAAC presented at the 36th International Symposium on ALS/MND in San Diego this year.
Please see the buttons below to view and download the presented posters!
New Publication!
Dr. Ileana Howard, Chair of the VA’s ALS Executive Committee, has teamed up with leading ALS care providers throughout the VA to understand the symptom burden and care satisfaction of our Veterans impacted by ALS. Their findings have been released in a new publication, “Symptom Burden and Care Satisfaction in US Military Veteran with ALS: Results of a National Survey.” Please see the button below to view and download the publication!
2026 Veterans Clinical Research Learning Institute (VCRLI)
The second annual Veterans Clinical Research Learning Institute (VCRLI) was held June 5 and 6th in Malvern, PA, at the Desmond Hotel.
The VCRLI program is an intensive two-day learning experience dedicated to educating Veterans on the clinical research process, therapy development, the treatment landscape, and advocacy in order to empower Veterans and caregivers to be advocates and valued contributors to ALS clinical research.
Resources
Your ALS Guide: a comprehensive online guide to living with ALS
ALS TDI Trial Navigator: A free resource from the ALS Therapy Development Institute for finding clinical trials
I AM ALS Signal: A free resource from I AM ALS for finding clinical trials
Les Turner Clinical Trial Participation Guidebook: An online guide for what to expect during the clinical trial process
