When: Mondays from 3pm – 4pm ET
Co-Chairs: Lara Garey (lost her veteran husband to 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 vets with ALS through legislative and collaborative actions.
- Educate and empower veterans with ALS and their loved ones on navigating the healthcare system.
- Raise awareness of 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?
- 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/)
- Gained a seat on the Veterans Health Administration (VHA) ALS Executive Committee
- 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 examples posts here, here and here)
- 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)
- Crafted an award that recognizes people who go above and beyond to improve the lives of veterans living with ALS and their loved ones
- Amplifies the stories of Veterans living with ALS, for example here is the story of Mary Ann Abeska
What are we working on:
- Developing ongoing collaborative relationships with veteran-centric organizations and raising awareness of ALS within those organizations.
- Pass the Elizabeth Dole Home Care Act and Justice for ALS Veterans Act
On the Fourth Wednesday of every month from 12-1pm CST, I AM ALS hosts a support group for Veterans living with ALS to share their experiences and receive emotional support. To sign up, click here.
If you would like to learn about other I AM ALS Community Teams, click here.