Big news out of Washington, D.C.! Due to your dedicated and passionate outreach — your letters and emails, your calls and visits — the Children’s Tumor Foundation is pleased to announce that $15 million in federal NF research funding to the Congressionally Directed Medical Research Program-Neurofibromatosis Research Program (CDMRP-NFRP) has been approved and signed into law for 2015! The CDMRP-NFRP is a health research program managed by the Department of Defense that provides crucial funding for NF research. In part, the CDMRP-NFRP fuels the NF Clinical Trials Consortium, which works to bring drug treatments to patients.
For over 18 years, this funding has been essential to the great strides that have been made in NF research, and it is your participation in the NF advocacy process that has ensured that this funding is secured for the Neurofibromatosis Research Program.
Earlier this year, on Advocacy Day during the NF Forum in Washington, D.C., a delegation of Children’s Tumor Foundation volunteers met with 34 Senators and Representatives to encourage government support for neurofibromatosis research.
Foundation President and Chief Scientific Officer Dr. Annette Bakker also traveled to Capitol Hill twice this year to meet with key House Appropriations Committee offices and advocate for continued funding, highlighting the latest developments in NF research and explaining how these discoveries benefit NF patients, patients facing other diseases with similar manifestations, and patients facing issues ranging from pain management to complicated bone breaks.
Foundation Vice President John Heropoulos joined Dr. Bakker on her second visit this year and spoke specifically about the work CTF is doing to build and support the NF community of patients and families. The Foundation has also been working in close collaboration with other NF organizations and disease groups in advocating for the benefits of congressionally-directed medical research more broadly.
Visit ctf.org/advocacy and CTF’s social media pages for updates on next year’s funding and opportunities to get involved.
Congratulations to all in the NF community for this achievement!
