Supporting Constituents Pressing for Awareness of Neurofibromatosis!

On Friday, Suffield’s Amy Reay joined Rep. Zawistowski to testify before the legislature’s Government Administration and Elections Committee in strong support of Senate Bill 1519 which will designate February fourteenth of each year as Neurofibromatosis Awareness Day, to raise awareness of this genetic condition that often begins in childhood and causes tumors to grow on nerves throughout the body and also may affect development of the brain, cardiovascular system, bones and skin.

If you know Amy, then you likely already know what Neurofibromatosis (NF) is. It’s not a rare disease, but a serious one that is usually but not always genetic, and symptoms usually start in childhood. Amy, who has dealt with NF since childhood, is an award-winning advocate for the NF community and has raised significant awareness and funding for research through Cupid’s Undie Run, a national multi-city event aimed at finding a cure. It takes place on a weekend around Valentine’s Day; hence the Feb 14th date for the proposed Neurofibramatosis Awareness Day.

“Finding a cure for neurofibromatosis is crucial not only to improve the quality of life for the individuals affected but also to reduce the long-term medical and psychological impacts on patients and their families, Rep. Zawistowski wrote in her testimony. “Proclaiming February 14th as Neurofibromatosis Awareness Day in Connecticut will go a long way towards turning public attention toward this disease and the urgent need for finding a cure.”

“I choose every day to try to focus on hope, advocate for awareness, and raise funds to someday find a cure for myself and all others living with NF,” Reay said during her testimony. “Naming February 14th as Neurofibromatosis Awareness Day in Connecticut will bring recognition to this devastating illness and motivate us to keep working hard. It won’t cost taxpayers a dime to give this day meaning for those fighting NF. Please name February 14 Neurofibromatosis Awareness Day in Connecticut and that all of us with NF feel seen and feel heard.”

You can read more about this proposed legislation by clicking here: https://www.cga.ct.gov/2025/TOB/S/PDF/2025SB-01519-R00-SB.PDF