We Will Keep Fighting For You

Author: NF Network

Published On: 07/07/25

It's been a long and wonderful journey advocating for federal funding for neurofibromatosis (NF) over the years. For 29 years, the NF Network Advocacy Program has proudly represented the NF community on Capitol Hill, playing a crucial role in securing over 400 million dollars for NF research. Our Advocacy trip in 2025, held on February 3-4, was no exception. We began with a mix of excitement and nervous anticipation, especially as federal spending cuts began to arise.

We started off strong, breaking our record with over 100 advocates rallying in the halls of Congress and the Senate, representing 49 states. 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).

Shortly after our trip, our worst fears came true when the FY25 Continuing Resolution, which included a 57% cut to medical research funding through the CDMRP, was presented to the House. In response, we launched an aggressive letter-writing campaign. We were thrilled to see countless individuals write to their congress representatives, explaining the urgent need to maintain funding for NF research. Unfortunately, the resolution passed the House and moved on to the Senate. Once again, we ramped up our efforts to try and save our critical research dollars.

After the cuts were confirmed, and we learned that for FY25 the Neurofibromatosis Research Program (NFRP) would not be funded, we shifted our focus to next year's funding and rallied our community once more. Your unwavering support was inspiring; you all came out strong time and time again. Thank you! We are pleased to report that the House Defense Appropriations Subcommittee has included $25 million for the Congressionally Directed Medical Research Program – Neurofibromatosis (NF) Research Program in its Fiscal Year (FY) 2026 Defense spending bill.

This is just the beginning, as the House committee's consideration is the first step in the approval process for FY26 spending bills. We will continue to keep you updated as the bill progresses through Congress in the coming months.

We are deeply grateful for the efforts of the NF Advocates and the NF Community in using your voices to ensure that Neurofibromatosis continues to receive the critical funding necessary to support research and work towards the treatments we urgently need.

With your commitment and advocacy, we will not stop educating and inspiring lawmakers to support NF research funding. Together, we can ignite the pursuit of better treatments and a cure for neurofibromatosis.

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