Advocacy

While NF science and research remain at risk,
we refuse to lose any momentum in our fight against NF!

Letters Sent to Congress

6,432

A U.S. flag waves in front of the United States Capitol building's white exterior, featuring columns and arched windows, under a partly cloudy sky.

NF Research Funding Is at Risk — Urge Congress to Act Now

Congress is now deciding whether to restore federal funding for NF research in the Fiscal Year 2026 budget. Critical support for NF through the Department of Defense’s CDMRP program was eliminated last year – and unless Congress acts, this lifesaving research remains in jeopardy.

Right now, lawmakers in the House and Senate are circulating letters urging continued investment in NF research. These letters are our best chance to get this funding back – but your lawmakers need to hear from you.

Write to Congress

Join the Movement

We believe ending NF will take a wide-range of collaborative partnerships, including coordinated efforts with researchers and scientists, educational institutions, clinics and hospitals, industry and the private sector, non-profit organizations, patients and families, and the government. Although we firmly believe we must do our part in funding and coordinating NF research, we also understand that the federal government plays a very unique and irreplaceable role in supporting these efforts.

Since 1998, CTF leadership has spent significant time in our nation’s capital to advocate directly with key Members of Congress and Executive Branch officials on behalf of a community working to find a cure for NF. We provide updates on the latest discoveries resulting from government investments in NF research and discuss ways the government and the non-profit sector can partner to help support and streamline NF research moving forward. We also highlight the Foundation’s community-based efforts that strengthen us as individuals facing NF through our friendships with one another.

Write to Congress

Share Your Story

Living with neurofibromatosis and schwannomatosis can be overwhelming, but sharing patient stories frames the diagnosis in a way that builds community and confirms that we are never alone on this journey.

Write your NF story

Record your NF story

Patients Help FDA Understand Life with NF

In the spring of 2024, a group of six patient representatives of the NF1 community met virtually with the FDA to share their perspectives on living with NF1 and cutaneous neurofibromas (cNFs) as part of the Patient Listening Sessions (PLS) FDA program. Patient listening sessions are an opportunity for the FDA to hear from the NF community directly.

This is the second time the Children’s Tumor Foundation coordinated a Patient Listening Session. The first, in 2019, highlighted the experience of NF patients broadly, with a particular focus on plexiform neurofibromas, This meeting, on May 21, 2024, aimed to shed light on the lived experiences of patients with cNFs, an often under-appreciated manifestation that is present in 95% of NF1 patients. Whereas cNFs have been historically considered a “cosmetic” issue, recent studies have brought to light the fact that cNFs strongly impact quality of life (causing pain, itching, and significant social distress) and remain a top priority for the NF1 community.