| Thanks to your advocacy efforts, we are pleased to announce that $20 million in federal funding has been SECURED for FY2021 for the Congressionally Directed Medical Research Program – Neurofibromatosis Research Program (CDMRP-NFRP.) Now on to 2022! In February, members of the NF Network Advocacy Program virtually met with staffers in the House and Senate to advocate for Fiscal Year 2022 funding for NF research. We are requesting $25 million for FY2022. Once again, we will call on you to help by contacting your Senators and Representative to enlist their support. This is a promising time for NF research because Koselugo, the first drug to treat pediatric patients with plexiform neurofibromas, was approved by the FDA in 2021. Additional very promising clinical trials are underway testing drugs to treat other types of NF tumors, which is why we are asking for increased funding. THANK YOU for your continued advocacy efforts and your support of the NF Network Advocacy Program. Together, with your help, we are able to continue educating congressional offices on the importance of these federal research dollars for NF research and help accelerate the search for treatments and a cure to end neurofibromatosis. Advocates participating in this program have been the voice of the NF community on Capitol Hill for over 25 years and have been instrumental in generating over $382 million dedicated to NF research. |
Advocacy has become one of the most important ongoing programs of our organization, and our efforts have paid off.
NF Northeast in February 2020
Since joining other NF organizations from around the country in 1996 to create the NF Network Advocacy Program we have worked closely with members of the House and Senate not only at the National Institutes of Health (NIH) but also through the Department of Defense Congressionally Directed Medical Research Program (CDMRP)
Note: funding from these programs goes directly to researchers. NFNE receives no government support.
Federal funding of NF research is always at risk, and as advocates we must let our representatives in Congress know how important it is to keep funding NF. Please help by contacting your Congressman and Senators to enlist their help. Here is a sample letter for you to use.
Watch this video to see promising results from our advocacy efforts!
