Get on Board, Building Survivor Involvement in Maine and Beyond

By Carole Starr and Kelly Lang, Brain Injury Advisory Council Members

Last year, brain injury survivors in Maine had a unique opportunity to learn how to get more involved in the brain injury community. Our virtual program, Get on Board, was hosted by the Brain Injury Association of America-Maine Chapter and funded by the Grassroots Project.

As long-term brain injury survivors, speakers, authors, and advocates, we recognize the importance of survivor involvement in the brain injury community. Get on Board gives survivors a structured, supportive way to learn how to share their stories, contribute to their communities, and explore leadership roles.

We created Get on Board to fill a gap we saw in the survivor community. Survivors have powerful stories and a strong desire to contribute, but many aren’t sure where to begin, often asking questions such as:

• How do I tell my story in a way that helps others?
• How can I turn what I’ve learned into something meaningful?
• Where can my voice make a difference?

 

Get on Board was designed to help survivors answer those questions and encourage involvement with practical training, support, and community.

A Statewide Response

Applications came in from 11 of Maine’s 16 counties. The program’s virtual format helped remove transportation, fatigue, and accessibility barriers, making it possible for survivors from all over the state to participate.

Three Modules Designed for Growth

The Maine Get on Board program included three structured learning modules. Each one addressed a different pathway for involvement. All attendees completed the first module, then chose additional ones based on their interests and energy level.

Module 1: Telling Your Story
Sharing one’s brain injury story can be powerful, but it also requires care and preparation. Participants learned to shape their stories in ways that were safe for them and helpful for their audience.
Module 2: Designing and Delivering Conference Workshops
Designing a workshop can feel daunting. This module walked participants through choosing a topic, writing a workshop proposal, and pacing a presentation in a way that works well for both presenters and participants with brain injury.
Module 3: Serving on Boards and Committees Survivors bring essential lived expertise to organizations, yet board service can feel intimidating. This module focused on how boards function, what effective participation looks like, and how survivors can evaluate whether a board or committee is a good match.

The Importance of a Survivor-Led Program

As survivors, we understand firsthand the importance of honoring a measured pace that works for survivors. In each module, participants gradually practiced skills learned in a safe, welcoming environment. We shared our own journeys, modeled pacing, and encouraged attendees to get involved in ways that worked for their individual brain injuries.

Building Confidence and Community

Throughout the program, participants demonstrated growth—sometimes in big leaps, sometimes in small but meaningful steps. Some discovered leadership potential they had never named. Others found confidence in sharing their voice. The sense of community was valued by all—being surrounded by people who not only understood brain injury, but who also shared a desire to make a difference.

Leadership in Action

The Maine Get on Board participants didn’t just learn new skills—they used them. Several joined us as co-presenters at the 2025 Maine Brain Injury Conference, where they shared their experience in the program and offered suggestions to other survivors who want to get involved. For some, it was their first time presenting publicly since their injuries.

We also presented a session about the Maine Get on Board program at the National Association of State Head Injury Administrators (NASHIA) State of the State Conference, held in Maine in October 2025. Sharing the program at a national gathering of state brain injury leaders demonstrated its potential to strengthen the survivor voice at both the state and national levels.

Get on Board participants are now exploring opportunities to join advisory groups, participate in advocacy efforts, and use their stories to help others. Their involvement strengthens Maine’s brain injury community.

Looking Ahead

The success of the Maine program is one step in our broader goal to support survivor involvement nationwide. With continued Grassroots funding, the Brain Injury Association of America-Tennessee Chapter will host a Get on Board program this year. For more information about the Tennessee program, contact Stacy Mulder at smulder@biausa.org.