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Veterans Community Team

When: Mondays from 3:00 p.m. – 4:00 p.m. ET

Co-Chairs: Ashley Lee (lost her veteran father to ALS), Juan Reyes (a veteran living with ALS), and Tim Abeska (lost his veteran wife to ALS).

Mission Statement: Raise awareness about veteran-specific ALS issues, educate the public about ALS and veterans, connect veterans with resources to improve their quality of ALS care, and accelerate the development of and access to treatments and cures. Vision Statement: Become the premier patient-driven organization advocating for veterans
affected by ALS and their families, and influence policies and practices intended to end ALS through treatments and cures.

Goals:

  • Raise awareness and improve lives of veterans with ALS through legislative and collaborative actions.
  • Educate and empower veterans living with ALS, and their loved ones, to help them navigate the healthcare system.
  • Raise awareness about the prevalence of ALS among veterans.
  • Support policy that improves the lives of veterans with ALS and their loved ones by providing them with resources, increasing funding for ALS research and/or providing
    easier access to clinical trials.

Accomplishments:

  • Worked with I AM ALS to create the VA Checklist for Veterans Living with ALS
  • Worked with I AM ALS to create the Planning Guide for Loved Ones of a Veteran with ALS
  • Worked with I AM ALS to create I’m a Veteran Diagnosed with ALS — Where Do I Begin? Note: this document refers to the Team by its former name of “Veterans
    Community Team” and ideally could be edited to reflect the current name.
  • Team members Mary Hahn Ward and Lara Garey wrote and published Thinking Through VA Benefits and VA Care to help veterans and their caregivers navigate the VA system.
  • Alongside the I AM ALS staff, helped develop the “Understanding Your Risks” and “Understanding and Navigating the VA” resources. (See https://www.iamals.org/veterans/) Note: This link is to a passed event from 2020, an on-line veterans support group.
  • Created a social media campaign that raised awareness about the increased risk of suicidal ideation among veterans living with ALS and linked people to resources (see example posts here, here and here) Note: The highlighted link is a post from Shelly Hoover who is no longer part of the Team, so this should be deleted.
  • Worked with I AM ALS to create a Mental Health Among Veterans with ALS webpage and a corresponding social media campaign (example, example and example) Note: This is the same link to the Shelly Hoover post.
  • Amplified the stories of Veterans living with, or lost to, ALS. For example, here is the story of Mary Ann Abeska
  • In coordination with the I AM ALS Legislative Affairs Team, advocated for the passage of  the Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act (see Congress passes landmark veteran’s legislation with key reforms for caregivers) Note: this link is to the Dole Foundation site. We may want to use a different link. I’m seeking input from Sonya.
  • Crafted a Veteran Champion Award to recognize people who go above and beyond to improve the lives of veterans living with ALS and their loved ones. In 2025 this was renamed as the The Brigadier General Thomas R. Mikolajcik Veteran Champion Award, to honor Brig. General Mikolajcik, who died on April 17, 2010, after battling ALS for over six years. To learn more about the Award and the nominating process, use this link: https://www.iamals.org/als-veteran-champion-award/ Note: This page needs to be revised to include the correct Team name, new name of the Award, biographical details about the General which Ron Faretra will provide, and brief statements about why the past recipients received the Award.

What are we working on:

  • Developing ongoing collaborative relationships with veteran-centric organizations and raising awareness of ALS within those organizations.
  • Ongoing legislative advocacy focusing on matters of importance to the veteran ALS community.
  • Developing an informational panel series to raise awareness about veterans and ALS.
  • Supporting families who lost a veteran to ALS.
    On the Fourth Wednesday of every month from 12:00 – 1:00 p.m. CT, I AM ALS hosts a meet
    up for veterans living with ALS to share their experiences and receive emotional support. To sign
    up, click here: https://www.iamals.org/action/join-a-support-group/ Note: We want to get away
    from the “support group” concept for the meet-up, so the linked page needs to be tweaked.
    If you would like to learn about other I AM ALS Community Teams, click here:
    https://www.iamals.org/action/volunteer/