Bill > J01923

This resolution, a formal request from the New York State Legislative Body, urges Governor Kathy Hochul to officially designate May 2026 as Neurofibromatosis (NF) Month within the state, aligning with the national observance. Neurofibromatosis is a serious and debilitating tumor disorder that affects over 130,000 Americans, and this proclamation aims to significantly increase public awareness of the condition. The resolution highlights the dedicated efforts of organizations like Neurofibromatosis Northeast, which has been working for over 30 years to find a cure, promote research, and support those affected by NF. It also acknowledges recent advancements, such as the FDA approval of the drug Koselugo for NF1 treatment and promising new clinical trials, underscoring the importance of continued research and awareness to improve the lives of NF patients and their families.