Your voice has the power to impact public policy ad promote action to find a cure for NF.
Advocacy
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.
Congressionally Directed Medical Research Program
The CTF Government Affairs Team continually expands the breadth of its advocacy and profile-building efforts with the guidance of outside counsel Squire Patton Boggs. We are also actively engaged with the Defense Health Research Consortium. This Consortium is composed of over 50 organizations dedicated to preserving annual funding levels for Congressionally Directed Medical Research Programs (CDMRP) within the Department of Defense.
Our voices are being heard! Because of continued strong advocacy work from the Children’s Tumor Foundation and the NF community, bipartisan leadership in Washington, D.C., included $25 million for NF research through the CDMRP for Fiscal Year 2024. This funding supports strategic research, resulting in new discoveries and better outcomes for NF patients and families and allows us to develop scientific data further, break through barriers, and forge a pathway to end NF.
CTF Champion: Squire Patton Boggs
Aubrey Rothrock, attorney and senior partner from the law firm Squire Patton Boggs are champions for CTF. Aubrey and his team successfully advocate for NF research through the Congressionally Directed Medical Research Program in the U.S., and have expanded the NF fight globally with the initiatives of CTF Europe.
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.
2024
2019
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