Shattering Records and Raising Our Voices

Author: NF Network

Published On: 02/22/2025

We shattered our record with over 100 advocates as we rallied in the halls of Congress and the Senate on February 3-4 of this year. It was an honor to visit our nation’s capital and lend a powerful voice to the neurofibromatosis (NF) community! The energy was electric as 106 advocates from across the country, alongside the NF Network, sought support from the Department of Defense's Congressionally Directed Medical Research Program (CDMRP) and for research at the National Institutes of Health (NIH). 

For 29 years, the NF Network Advocacy Program has proudly represented the NF community on Capitol Hill, playing a crucial role in securing over half a billion dollars for NF research. Coming together for a common goal is truly amazing, with advocates representing 49 states! 

We are deeply grateful for your unwavering advocacy efforts and support of the NF Network Advocacy Program. With your voice and commitment, our advocates will continue to educate and inspire lawmakers to back NF research funding. Together, we can ignite the search for better treatments and a cure for neurofibromatosis. 

We take immense pride in honoring our sponsors: Alexion Pharmaceuticals, NF Northeast, NF Midwest, NF North Central, Texas Neurofibromatosis Foundation, NF Arizona, NF Central Plains, Neurofibromatosis Michigan and Penny’s Flight! Your support and partnership were essential to the success of our event, and we truly appreciate your involvement.