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Advocacy Update

By March 30, 2017December 5th, 2023Advocacy

Children’s Tumor Foundation Fights for NF Research Funding in Our Nation’s Capital

On Monday, February 27, Children’s Tumor Foundation President and Chief Scientific Officer Annette Bakker, PhD, and Vice President of Marketing and Communications Simon Vukelj advocated on Capitol Hill for continued funding of the Congressionally Directed Medical Research Programs (CDMRP) for neurofibromatosis research. They met with the staff of nine key Members of Congress who sit on the House Committee on Appropriations Subcommittee on Defense, which included the offices of Ranking Member Peter Visclosky (D-IN), and Reps. Steve Womack (R-AR), Betty McCollum (D-MN), Dutch Ruppersberger (D-MD), Martha Roby (R-AL), Hal Rogers (R-KY), Tom Graves (R-GA), Tim Ryan (D-OH), and Marcy Kaptur (D-OH). As appropriators, these Members of Congress are instrumental in determining the future of the CDMRP. The Children’s Tumor Foundation requested that Congress continue its longstanding support for NF research by providing $15 million through the CDMRP-Neurofibromatosis Research Program (NFRP) in FY 2018.

The message for level funding of the NFRP was well received. Many of the Congressional offices were familiar with the history of the NFRP and understood that NF research is a critical part of the United States Military’s research mission.  They agreed the research benefited both the 125,000 Americans living with NF and thousands of warfighters and veterans. These offices were encouraged that CTF is leading the way for promising NF research and partnering with the National Institutes of Health and the Department of Defense to coordinate research grants, leverage funding, and accelerate the path to clinical benefit. They were also interested in work CTF is doing to bring the best care to patients and find a cure. The creation of the NF Clinical Trials Consortium helped CTF demonstrate the direct impact of CDMRP funding for NF Research and the devastating impact of not funding the program in FY 2018.

Following the meetings, the Children’s Tumor Foundation submitted written FY 2018 appropriations requests to all members of the House Committee on Appropriations Subcommittee on Defense. As the 2018 appropriations process progresses, the Children’s Tumor Foundation will work to ensure that NF research funding is protected.