State Representative Tami Zawistowski (R-61) joined Amy Reay and more than 20 of her close friends and teammates Wednesday night to celebrate Connecticut’s inaugural Neurofibromatosis Awareness Day!

Neurofibromatosis (NF) is a group of genetic disorders that cause tumors to grow on nerves throughout the body, and can appear at different stages of life, from childhood through adulthood. There is no cure, and management often requires lifelong medical care.

Rep. Zawistowski met Amy several years ago and has learned more about this disease by listening to her first-hand experiences, and to her testimony before the legislature's Government Administration and Elections Committee last year.  

"Amy is easily the most resilient and determined person I have ever met," Rep. Zawistowski said. "Her efforts toward finding a cure through fundraising for the Children’s Tumor Foundation have been relentless, thanks to the team she assembled to participate in the national level Cupid's Undie Run, held around Valentine’s Day each year, and the many people in Suffield and beyond who have generously donated their time and money to this cause."

It is because of Amy and her supporters that Rep. Zawistowski introduced a bill last year to bring even further awareness to this disease, and to potentially bring it closer to a cure. Connecticut is only the second state in the country, after Ohio, to specifically set aside a day in recognition of this disease.

During her testimony before the legislature last year, Amy stated "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."

"This is a meaningful moment for the NF community in Connecticut. Thank you to Representative Zawistowski for leading this effort and to Governor Lamont for recognizing NF Awareness Day," Simon Vukelj, Children's Tumor Foundation Chief Marketing Officer, said. "Most of all, thank you to the Connecticut families and advocates who showed up and turned their voices into action, especially Amy Reay, whose testimony brought the reality of living with NF directly to state leaders. Recognizing NF is important and accelerates what families are fighting for: more urgency, more resources, and more momentum to drive medical research, advance treatments, and move us closer to a cure for people living with neurofibromatosis or schwannomatosis."  https://www.ctf.org/