Big NF news out of Washington, D.C. today! Thanks to your dedicated and passionate outreach – your letters and emails, your calls and visits, as well as the collaborative efforts of a number of NF organizations – we are pleased to announce that $15 million in federal NF research funding to the Congressionally Directed Medical Research Program-Neurofibromatosis Research Program (CDMRP-NFRP) is included in the just-released Omnibus federal funding agreement for Fiscal Year 2016.
The CDMRP-NFRP is the NF 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 19 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.
Importantly, this funding is possible because of the collaborative efforts of various NF organizations, whose members have traveled to Capitol Hill and to district offices numerous times this year to meet with key House Appropriations Committee staff and to advocate for continued funding by highlighting the latest developments in NF research, and explaining how these discoveries benefit not only NF patients, but also patients facing other diseases with similar manifestations, and broader issues such as pain management and bone complications affecting the warfighter.
The NF community of patients and families should be proud of this achievement today. By working together – across organizations, regions, and demographics – our success means we are together working for improved lives not just for NF patients and members of the military, but across the broader medical research landscape.
Congratulations to all in the NF community for this achievement!
P.S. The next step in this process is expected approval from the House and Senate, and then an expected signature from the President. And then in just a few months, we will start the process again for Fiscal Year 2017 budgeting. Watch this space for more information, because we won’t stop advocating, until we end NF! In order to get involved, email media@ctf.org and please share your NF story.
