The Children's Tumor Foundation
06/29/2026 | Press release | Distributed by Public on 06/29/2026 10:42
Florida Makes History: First State in the Nation to Fund NF Research
Governor Ron DeSantis has signed the 2026-2027 budget, which includes the groundbreaking Neurofibromatosis Disease Grant Program. The new program provides $5 million for competitive, peer-reviewed scientific and clinical research focused on advancing diagnostics, treatments, and cures for neurofibromatosis. This program makes Florida the first state in the nation to establish dedicated funding for NF research.
The effort was led by Gabe Groisman, Chair of the Children's Tumor Foundation Board of Directors. A government affairs attorney at Groisman, LLC, and former Mayor of Bal Harbour, Florida, Groisman brought NF directly before state leaders and made the case for an investment no state had made before.
"This is a defining moment for the NF community," said Groisman. "Florida has put real resources behind a field with extraordinary scientific opportunity and urgent patient need. This funding will allow more researchers to pursue NF, more strong ideas to move forward, and more potential treatments to be tested. I am deeply grateful to Governor Ron DeSantis, Senate President Ben Albritton, Speaker Danny Perez, Representative Karen Gonzalez-Pittman, Senator Jason Pizzo and Senator Ana Maria Rodriguez, along with so many others in the Florida Legislature who recognized what this investment can mean for people living with NF."
For researchers, the opportunity is immediate: a new, dedicated source of funding to pursue the strongest science in NF.
For the broader field, the significance is even greater. State investment brings new institutions, investigators, expertise, and capital into NF, expanding the field and increasing the number of paths that can lead to treatments. Florida has created a model other states can follow - opening a new pathway for public investment in NF research and bringing additional resources into the field.
That is the work CTF has been driving.
CTF uses its field-wide intelligence across patients, clinicians, scientists, academia, industry, clinical trials, funders, and emerging science to see the entire NF landscape: where the strongest opportunities are, where barriers remain, and what combination of science, funding, infrastructure, and partnership can move the field forward.
CTF then acts on that intelligence - bringing new researchers and companies into NF, identifying promising therapies, building the infrastructure required to test them, advocating for public investment, and connecting the field around the opportunities most likely to reach patients.
The results have changed what is possible in NF. CTF played a central role in identifying and advancing the science and development pathways that led to Koselugo and Gomekli, the first two FDA-approved NF therapies. Brigatinib, identified through CTF's collaborative NF2 research model, is now included in National Comprehensive Cancer Network Guidelines for NF2-related schwannomatosis, providing physicians, patients, and insurers a recognized treatment pathway in a condition with no FDA-approved therapy. That same field-building approach has helped bring more than 20 pharmaceutical and biotechnology companies into NF and contributed to a pipeline of more than 60 active clinical trials.
Florida's $5 million investment brings a powerful new source of funding into that growing field.
"CTF has built a connected system that turns promising NF science into treatment opportunities," said Annette Bakker, PhD, Chief Executive Officer of the Children's Tumor Foundation. "Florida brings more researchers, institutions, and resources into that system. That means more excellent science can be pursued, more potential treatments can move forward, and the entire NF field becomes stronger."
Florida is home to important NF research and clinical expertise. CTF's work in the state includes its NF Clinic Network, Florida-based researchers and clinicians, and partnerships that bring additional funding and expertise into NF, including a collaboration with the Dolphins Challenge Cancer and Sylvester Comprehensive Cancer Center supporting an international schwannomatosis research consortium.
The new state program builds on CTF's broader work to expand public investment in NF research. Earlier this year, $25 million was restored for the Neurofibromatosis Research Program through the Congressionally Directed Medical Research Programs, which CTF has long championed. Since the program began, nearly $500 million in CDMRP funding has been directed toward NF research.
The Florida Department of Health will administer the Neurofibromatosis Disease Grant Program. Florida universities and research institutions will be eligible to compete for funding, with preference given to collaborative proposals involving institutions, investigators, and community practitioners.
Additional information about eligibility, applications, and timing will be released by the Florida Department of Health. CTF will share those details as they become available.
The Children's Tumor Foundation published this content on June 29, 2026, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on June 29, 2026 at 16:42 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]