Veterans Team

When: Mondays 3pm – 4pm ET

Co-Chairs: Shelly Hoover (Veteran living with ALS) and Mandi Bailey (stepdaughter of a veteran we’ve lost 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?
• Developed a directory of resources for veterans with ALS and their caregivers
• 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://iamals.org/veterans/)
• Gained a seat on the Veterans Health Administration (VHA) ALS Executive Committee
• Were invited to present at the Paralyzed Veterans of America (PVA) conference in 2021
• Had an ePoster and video accepted at the ALS/MND symposium in 2021
• 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 the Mental Health Among Veterans with ALS webpage
• Advocated congressional members of the VA Armed Services Committee to support for ACT for ALS 
• Crafted an award that recognizes people who go above and beyond to improve the lives of veterans living with ALS and their loved ones 
• Raised awareness of ALS and veteran specific issues through grassroots media pieces  
• Raised awareness about the high prevalence of ALS among veterans and connected people to appropriate resources and action

What are we working on:  

• Developing ongoing collaborative relationships with veteran-centric organizations
• Creating an outreach strategy to raise awareness about the prevalence of ALS among veterans
• Working with the I AM ALS legislative team on ALS-related legislation
• Collaborate with Wreaths Across America to honor vets impacted by ALS and raise awareness for veterans living with ALS
• Continue building meaningful relationships with other ALS and veterans organizations 
• Work alongside researchers to gain a deeper understanding of the needs and concerns of vets living with ALS
• Present at multiple conferences to continue to raise awareness about the needs of veterans living with ALS
• Work with state and national legislators and government agencies to improve the lives of veterans living with ALS and their loved ones
• Advocate for expanded access programs for veterans
• Create resources and guides for newly diagnosed veterans 
• Pass the Justice for ALS Veterans Act

Co-Chairs

Co-Scribes

Team Members