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.
Your elected officials need to hear from you and we’ve made the process easy. Just fill out this form and send a personal note expressing your support for NF funding. In order to have the greatest impact, please include your name and address, and your note will be delivered to the elected official that represents you in Congress.
This letter-writing tool is powered by PopVox, which will ensure delivery of your letter to your Congressional Representative and Senators. You will be given the opportunity to create a password so that you can log in again for future campaigns.
Here is some sample text you can include in your note; feel free to modify and add your own personal message:
As a constituent closely touched by neurofibromatosis (NF), I write to ask that you support the critical research initiatives conducted within the Department of Defense Congressionally Directed Medical Research Program (CDMRP). These research programs target diseases and disorders that impact directly the welfare of the American military, their families, veterans, and the public. Occurring in one of every 3,000 births and affecting over 100,000 Americans, NF causes tumors to grow along the nervous system.
NF research is at a critical stage. Great strides have been made since Congress first funded the NF Research Program in 1996, but continued funding is needed to translate clinical trials into effective treatments. I respectfully request that you continue Congress’ longstanding support of NF research by providing $15 million level-funding for the CDMRP-NF Research Program. With your support, we can move closer to the goal of successful therapies for NF and improve the lives of those affected. Thank you.