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CTF Advocates for Federal Funding of NF Research

By March 18, 2019December 5th, 2023Advocacy

This past February, Annette Bakker, President of the Children’s Tumor Foundation, and Simon Vukelj, Chief Marketing Officer, visited the U.S. House of Representatives to advocate for the Congressionally Directed Medical Research Program-Neurofibromatosis Research Program (CDMRP-NFRP). CTF requested Congress support the NFRP by continuing a $15 million investment in NF research in Fiscal year 2020. CTF had 13 meetings with defense staff for Members of Congress who sit on the House Committee on Appropriations Subcommittee on Defense: Full Committee Chairwoman Nita Lowey (D-NY), Subcommittee Chairman Peter Visclosky (D-IN), Subcommittee Ranking Member Ken Calvert (R-CA), and Reps. Hal Rogers (R-KY), Dutch Ruppersberger (D-MD), Peter Aguilar (D-CA), Tom Cole (R-OK), Tim Ryan (D-OH) Robert Aderholt (R-AL), Steve Womack (R-AR), Henry Cuellar (D-TX), Charlie Crist (D-FL), and Betty McCollum (D-MN). Staffers were enthusiastic about the progress made due to the unique CTF research model, which coordinates CTF, Department of Defense (DOD), and National Institutes of Health (NIH) NF research. Notably, staff suggested that the CTF model should be viewed as the preferred template for all CDMRP research areas. Following the meetings, CTF submitted written appropriations requests to all lawmakers on the House Committee on Appropriations Subcommittee on Defense. As the FY 2020 appropriations process progresses, CTF will continue to serve as a trusted resource for Members of Congress and advocate for NFRP funding.

CTF also is a member of the Defense Health Research Consortium (DHRC), and recently represented the DHRC with four other consortium members at a March meeting with Republican and Democrat staff from the Senate Committee on Appropriations Subcommittee on Defense. Staff voiced their strong support of the CDMRP and said the Chairman and Ranking Member are committed to supporting the various CDMRP research programs.