Reeve Road Show: Give and take in the community
Around the Reeve Foundation, it's called the "Road Show." It's a coast-to-coast moveable community event showcasing the Foundation's work in research, quality of life and advocacy.
The Show begins with hors d'oeuvres, followed by remarks by Reeve President and CEO Peter Wilderotter, who lays out the basic structure of the Foundation and its various departments. He's followed by Bill Cawley, Director of Community Programs Development and Susan Howley, Executive VP, Research.
"We offer a broad overview of all our Foundation programs," says Howley, "including quality of life, military and veterans, and research. Experience has taught us that most Road Show guests are anxious to learn more about spinal cord research -- they soak up the information like sponges -- so the evenings are heavily weighted to our research programs."
The Road Show gets into details, but it isn't science class. "I don't dwell much at the cellular and molecular end of the spectrum. I try to impart an appreciation for the processes we've established to fund research; an understanding of the infrastructure we've built (not bricks and mortar infrastructure, but the expertise, tools and resources that facilitate to basic and translational research).
Howley emphasizes the inter-related nature of the Reeve Foundation's major research programs -- International Research Consortium on Spinal Cord Injury, the North American Clinical Trials Network, the NeuroRecovery Network and the Individual Research Grants program.
"I'm not sure what knowledge our guests bring with them into the room," Howley continues, "but at the end, they surely understand the incredible breath and depth of our research programs. They are eager for new knowledge and information but one of their greatest challenges is appreciating the complexity of the spinal cord, particularly in terms of repairing it after injury. Another is learning to correctly interpret the incredibly simplified pabulum dished out as dogma by much of the lay media and on the Internet."
After Howley's presentation the audience asks questions. "This is really the best part of the Road Show," says Wilderotter. "The community interaction really affirms our message that this is a larger and more complex problem than many are aware, but that we are committed to it on many fronts."
Notes Howley, "Invariably there are questions about stem cells and about the off-shore cell transplant clinics. Many in the community seem to struggle separating the wheat from the chaff, the self-reported anecdotal stories of improvement vs. the skepticism of the mainstream scientific and medical communities about these treatments." There are also questions about the NeuroRecovery Network. "People are excited about the program; they want to know why there isn't an NRN site in their communities, which of course leads to the more sobering issues of finances and health insurance and healthcare reform."
Says Cawley, "The Road Shows offer a great balance of information and community. The audience hears an honest and responsible but promising message about the state of research -- while learning about the other program services of the foundation. Then we see the community really connect. People with SCI talking to other SCI people, parents and caregivers talking to other parents and caregivers, non-profits talking to people in chairs and their parents, families talking to doctors. We get to connect with old friends and meet new ones."
Howley also appreciates the give and take. "Meeting the people after the formal presentations, engaging with them and learning their stories -- it brings me back to the Reeve reality: why we do what we do. When we're sequestered in our offices, at our desks, caught up in the minutia of our jobs, it's easy to forget that there are so many living with spinal cord injury who are depending on us. These Road Shows are a wonderful way to insure that disconnect doesn't happen, to stoke our fires and keep us focused on the endgame.
"We are struck by how smart those who attend our Road Shows are, how in command of their lives they are and how they live their lives with balance, good humor, dignity and determination. We are struck also by how hard it is for so many in a world that is unforgiving on so many levels. Our experience has been that the truth resonates with them. And so we pull no punches, we tell the truth as we know it."