Eighty three advocates from twenty three states descended on Capitol Hill on February 11th and 12th, 2019 to meet with members of Congress and their staff to discuss critical NF research programs.
NF Northeast is a proud member of The NF Network Advocacy Program, the leading national Neurofibromatosis advocacy program working to secure federal funds for neurofibromatosis research. The program consists of several NF patient advocacy organizations coming together as one voice on Capitol Hill educating congress on the importance of funds for NF research. The program is advised by a Leadership Council and attended by NF patient organizations and individual participants.
For the past 23 years, during Hill Visit days, the NF Network Advocacy Program stomped the halls of congress with strong NF advocates educating congressional offices about the importance of federal funding for NF research. Advocates participating in this program have been the voice of the NF community on Capitol Hill for 23 years, and have been instrumental in generating over $600 million dedicated to NF research.
Since 1996, NF research has been funded through two vehicles:
Funded research led to the creation of the NF Clinical Trials Consortium a group of 21 clinical sites worldwide with an operational center to analyze data.
NF advocates, urge his/her Senators and Representatives to support NF research funding through the CDMRP and the NIH. Continued Congressional funding is critical to the clinical trials that may ultimately lead to a treatment and cure for NF and related disorders. It is with support of the NF Advocates that the funding programs become possible.
Even if you don’t go to DC, your voice needs to be heard and you can play a vital role in securing federal funding for NF research. Sign up here to receive advocacy updates and we will tell you when and how to send a message to your Representative and Senators. They need to hear that NF research is important to you, and you will play a vital role in securing federal funding for NF research.