Derek’s Squad

07/20/2026

Sign up and walk with Derek’s Squad

Find an NF Walk near you. Register for free

07/20/2026

The walk is coming up fast you can donate here if you would like to help out or come join us and sign up to walk with Derek’s Squad💙💚

Help End NF with the Children’s Tumor Foundation

07/20/2026

Derek’s Squad front and center 💙💚

07/20/2026

07/19/2026

Derek’s Squad has made it onto the Cone ! Thank you For helping us Spread awareness for Neurofibromatosis 💙💚💙💚

06/30/2026

Florida just made NF history!

For the first time in the nation, a state has created dedicated funding for NF research: a new $5 million program signed by Governor Ron DeSantis to advance diagnostics, treatments, and cures.

The effort was led by CTF Board Chair Gabe Groisman, whose advocacy brought NF before Florida leaders and helped turn this first-of-its-kind investment into reality.

This means more researchers, more strong ideas, and more potential treatments moving forward — and it gives other states a model to follow.

Our thanks to Governor Ron DeSantis, Senate President Ben Albritton, Speaker Daniel Perez, Karen Gonzalez Pittman State Representative District 65, Senator Jason Pizzo, Senator Ana Maria Rodriguez, Senator Ileana Garcia, and the Florida Legislature.

Read more: https://www.ctf.org/news/florida-makes-history-first-state-in-the-nation-to-fund-nf-research

06/24/2026

We are pleased to announce that the House Appropriations Committee has included $25 million for the Congressionally Directed Medical Research Program – Neurofibromatosis (NF) Research Program in its Fiscal Year (FY) 2027 Defense spending bill.

The bill will be considered by the House Appropriations Committee on June 24. House committee consideration is the first step in the approval process for FY27 spending bills. We will continue to keep you posted as the bill moves through Congress over the next several months.

This is an important and encouraging step in the process, though the funding is not yet final. It reflects the strength of advocacy across the NF community, including the work of NF organizations and advocates nationwide, as well as Congress’ longstanding support for NF research.

We are deeply grateful to every patient, family member, advocate, researcher, clinician, and supporter who has raised their voice and helped demonstrate what continued federal investment can mean for scientific progress and the development of new treatments.

06/24/2026

House Proposes $25 Million for NF Research

We are pleased to announce that the House Appropriations Committee has included $25 million for the Congressionally Directed Medical Research Program – Neurofibromatosis (NF) Research Program in its Fiscal Year (FY) 2027 Defense spending bill.

The bill will be considered by House Appropriations Committee on June 24. House committee consideration is the first step in the approval process for FY27 spending bills. We will continue to keep you posted as the bill moves through Congress over the next several months.

This is an important and encouraging step in the process, though the funding is not yet final. It reflects the strength of advocacy across the NF community, including the work of NF organizations and advocates nationwide, as well as Congress’ longstanding support for NF research. We are deeply grateful to every patient, family member, advocate, researcher, clinician, and supporter who has raised their voice and helped demonstrate what continued federal investment can mean for scientific progress and the development of new treatments.

ctf.org/advocacy