Improving the Lives of Americans Living with Paralysis

More than five million Americans live with some form of paralysis. Guided by the inspiring vision of its founders, the Christopher & Dana Reeve Foundation works to advance “today’s care and tomorrow’s cure” through a dynamic mix of quality of life resources and services, research investments and powerful advocacy. How do we build on that legacy to amplify and advance this critical mission?

FOCUS 

We work hand-in-glove with the Reeve Foundation team to provide DC-based federal policy, strategy, and advocacy consulting with the singular goal of improving the lives and futures of individuals living with paralysis. We began our initial strategy development process with deep dive into the organization’s history and the policy successes that got us to today, then incorporated those into an ongoing brainstorm about what could be – whether in terms of additional resources invested in quality of life; a public-sector research policy agenda that aligns with the Foundation’s own plans for investment; or building the evidence base necessary to pursue reimbursement for cutting-edge and innovative therapies. All the while, we partner with the Foundation to facilitate impactful advocacy, connecting community voices to policymakers.

IMPACT:

• Helped craft the Foundation’s 2020 Policy Agenda and rolled it out in a presentation at the first-ever Reeve Foundation in-person conference, the Reeve Summit, in February 2020.
• Through coordinated legislative advocacy, grassroots engagement, and resource development for policymakers, successfully worked to increase federal investment in the Paralysis Resource Center (PRC) by $1 million in Fiscal Year 2020.
• Following strategic outreach, engagement, and education of executive branch officials about the impact of the PRC, saw the President’s Fiscal Year 2021 Budget request go from program elimination to full funding.
• Co-hosted an ongoing series of webinar briefings for the Reeve Foundation “Regional Champions,” grass-tops advocates who’ve taken on a more engaged role around policy. Webinars consist of updates on the latest policy developments, key action steps for influencing policy, and spotlighting the work of individual advocates around the country.
• Presented to the Foundation’s entire leadership and staff on the policymaking climate in DC, the long-term policy strategy developed in partnership with the Foundation, and opportunities for progress in the coming years.