Skip to main content


Your voice has the power to impact public policy ad promote action to find a cure for NF.

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.

United States Capitol building

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! In 2022, 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 2023. 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

A group of six NF patient-advocates addressed the U.S. Food and Drug Association (FDA) to share their experiences of living with NF. Five young people with NF1 and one with NF2-SWN traveled to Bethesda, MD with Children’s Tumor Foundation staff on June 13, 2019 to offer vivid, unforgettable personal accounts of living with NF to officials from the Food and Drug Administration (FDA). The format, Voice of the Patient, is an informal discussion designed to help those involved in the drug approval process understand the obstacles and unmet needs of those who might benefit from emerging new drug treatments.

Following an emotional session in which representatives ranging in age from 14 to 26 and their parents described their medical journeys and hopes for the future, Andrea-Furia Helms, Director of the Patient Affairs Staff, expressed gratitude on behalf of the agency, saying, “You are the experts in NF. We need to hear from you. Your stories are critical for us to understand.”

Patients Explain Life with NF
NF patients and advocates standing in front of FDA building

Stay Up-To-Date

Join our mailing list for news, exclusive resources, events and opportunities.

"*" indicates required fields

This field is for validation purposes and should be left unchanged.