Spotlighting our Reeve Regional Champions

Posted by Reeve Staff in Life After Paralysis on February 02, 2021 # Advocacy and Policy

Late last year, when the Christopher & Dana Reeve Foundation asked for help recruiting advocates for its Regional Champions program, Cindy Kolbe was ready. As a longtime Reeve peer mentor and the author of Struggling with Serendipity, a memoir of life after her daughter’s C6-C7 injury, Kolbe’s network of friends and social media strangers-turned-acquaintances stretched across the country; she quickly picked up the phone and made the pitch for Reeve.

Now, thanks to those efforts, a dozen new volunteers from Missouri to New York will help kick off the program's third year as it continues to build local links between people living with disabilities and their legislators.

The work of Reeve’s regional champions makes a crucial difference in advancing legislative priorities for people with disabilities, according to Chris Carson, Reeve Foundation Advocacy and Public Policy Coordinator.

“What gives advocacy its power is just regular people telling their stories,” says Carson. “It makes a huge difference for members of Congress to hear directly from people about what it means to have access to the Paralysis Resource Center or to have our Quality of Life grants going to non-profit organizations in their home district. It helps forge bonds between our advocates and congressional offices.”

Reeve’s regional champions are currently located in 23 states and range from individuals living with spinal cord injuries to family members, caregivers and disability advocates. Kolbe was one of the program’s earliest volunteers; since 2018, she has served as a regional champion in three states, sharing her family’s story with political leaders in South Carolina, West Virginia, and most recently, Massachusetts.

“Stories are powerful, and I think they can help senators and representatives better understand the issues,” Kolbe says.

Whether meeting with congressional staff in person, calling on the phone, or simply sending emails to urge legislative action, Kolbe tries to share details that illustrate how public policy can affect real lives. She describes the repeated damage done to her daughter’s wheelchair in order to emphasize the importance of improving air travel for people with disabilities; she advocates for the Reeve Foundation’s Paralysis Resource Center by explaining how their website helped her family navigate the early and difficult days after her daughter’s injury.

“I’ve always been interested in advocating, in how we can amplify our voices and make a bigger impact,” Kolbe says.

Noreen Gunnell became a regional champion in New Jersey in 2018 to advocate for the PRC when its funding was in danger of being cut from the federal budget. Gunnell, who sustained a C6-C7 injury in 1990, long before the PRC existed, met personally with staff in the offices of Senators Booker and Menendez to convey how helpful such a resource would have been for her when she was first injured. She also praised the PRC’s Quality of Life grants, spotlighting accessible trail programs that allowed her to “get out and push,” one of her favorite activities.

At the end of one meeting, when staffers began speaking about people in their own lives with mobility issues, Gunnell understood that a connection had been made.

“I felt a sense of efficacy, like I made a small impact,” she says. “And usually that’s how things change. One person at a time affecting another person.”

By speaking out locally, regional champions can not only help raise awareness about the Reeve Foundation’s policy work, but also discover the power in their own voices.

James Murtha, a telehealth faith-based counselor and mental health therapist in Michigan, connected with the Reeve Foundation not long after he sustained a C4 spinal cord injury in 2014. When the Regional Champions program launched, he was curious, reading its newsletter and regularly joining the monthly webinars to hear updates on legislation in Washington. Soon, Murtha found himself visiting the offices of local senators and representatives, sharing his concerns about care coverage and a lack of effective support for people with disabilities.

“It was nerve-wracking at first,” he says. “I wasn’t sure how I was going to be received, but people were really warm and receptive. It turned into more of a conversation than a presentation.”

Impressed with his passion for advocacy, the Reeve Foundation nominated Murtha in 2019 to serve on the RAISE Family Caregiving Advisory Council, which provides recommendations on how to improve and support effective models of family caregiving to the Secretary of Health and Human Services. Murtha was selected as just one of 15 non-federal members from across the country and has spent the last year-and-a-half studying ways to address caregiver shortages and increase supports for care recipients and care agencies.

“It has been the opportunity of a lifetime and it never would’ve happened without the Regional Champions,” Murtha says. “I think the Regional Champion program has given me the education and reassurance that we can make a difference. I feel like my voice is being heard.”

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Help advance legislative efforts to improve life for people living with paralysis: Sign up to become an online advocate for the Reeve Foundation. For information on becoming a Regional Champion please contact Chris Carson, [email protected]

The RAISE Family Caregiving Advisory Council’s monthly meetings are open to the public. To see its upcoming schedule and learn more about its work, visit the Administration for Community Living website. Find the council’s recommendations to Congress here.