Advocacy

We believe that ending NF will take a wide range of collaborative partnerships, including coordinated efforts with researchers and scientists, educational institutions, clinics and hospitals, industry and the private sector, non-profit organizations, patients and families, and the government. Although we firmly believe we must do our part in funding and coordinating NF research, we also understand that the federal government plays a very unique and irreplaceable role in supporting these efforts.

Since 1998, CTF leadership has spent significant time in our nation's capital to advocate directly with key Members of Congress and Executive Branch officials on behalf of a community giving its all to find a cure for NF. We provide updates on the latest discoveries resulting from government investments in NF research and discuss ways the government and the non-profit sector can partner to help support and streamline NF research moving forward. We also highlight the Foundation's community-based efforts that strengthen us as individuals facing NF through our friendships with one another.

Between these visits to Washington, D.C., we work to keep you informed on the latest and best ways you can get involved, from participating in events, to writing your government representatives, to joining us for visits on the Hill. Keep checking in to this page for the latest in our efforts and how we can help you get involved in advocating for NF research.

 

ADVOCACY ALERT: Children's Tumor Foundation Works to Maintain CDMRP Funding for FY 2015

Foundation President and Chief Scientific Officer Annette Bakker traveled to Capitol Hill twice this year already to advocate for continued level funding of the Congressionally Directed Medical Research Program – Neurofibromatosis Research Program (CDMRP-NFRP) for FY 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.

In these visits, President Bakker met with key House Appropriations Committee offices who have jurisdiction over the CDMRP-NFRP. She highlighted the latest developments in NF research, and explained how these discoveries benefit NF patients, patients facing other diseases with similar manifestations, and patients who are also war fighters facing issues ranging from pain management to complicated bone breaks. She also highlighted CTF's work in coordinating with the wider research community to help ensure that CDMRP-NFRP funding is well-invested.

Foundation Vice President John Heropoulos joined President Bakker on her second visit this year, and spoke specifically to the work CTF is doing to build and support the NF community of patients and families. CTF has also been advocating in close collaboration with other NF organizations and other disease groups advocating for the benefits of congressionally-directed medical research more broadly.

With the NF Forum and NF Conference taking place in Washington this June, CTF is also thrilled to be planning for a delegation of the NF volunteer community to join in these advocacy visits. CTF Advocates will help us amplify the message urging government support for NF research. We have a lot of work ahead of us, but with this community, we know anything is possible!

 

Click here to learn why advocacy is important, and more about our past success

Contact Us

Children's Tumor Foundation
120 Wall Street, 16th Floor
New York, NY 10005-3904

Phone: 212-344-6633

info@ctf.org