Friday: Public Hearing on SB1519 – to make Feb. 14th Neurofibromatosis Awareness Day

On Friday, the legislature’s Government Administration and Elections Committee is holding a public hearing on multiple bills, including Senate Bill 1519 which will designate certain days, weeks, and months to bring awareness to important public issues or honor people or organizations of note.

The second section of the bill states: “The Governor shall proclaim 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 Reay from Suffield 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.

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

The deadline to register to testify in person in Hartford, or online via Zoom, is Thursday, March 20th at 3:00 p.m.. If you’d like to send a written comment into the committee, please follow the instructions below.

How to Testify

You can find details about the bills under consideration by visiting each legislative Committee’s page on the General Assembly’s website. Each committee also has their own YouTube Channel linked on the committee page.

During the 2025 legislative session, public meetings and hearings at the Legislative Office Building may be held virtually or in-person/hybrid. As always, you are encouraged to participate and submitting written testimony is even easier than ever.

There are a few ways you can submit testimony.

In Writing – A form to submit written testimony online can be found by clicking a link on the left-hand side of each specific committee webpage. The form asks for basic information, including your full name, the bill number, public hearing date, etc. It is important to also include your address and a definitive statement of support or opposition to the bill you’re testifying about.

Example:

Live Testimony – Most committees are hosting hybrid meetings, meaning you can testify in-person, in Hartford, or via Zoom from your computer. To register to testify in person, click on “public hearing agendas” and select the date of the hearing. Information regarding each specific public hearing and a “Register to Speak” link will be located there.

The deadline to register to testify in person in Hartford, or online via Zoom, is Thursday, March 20th at 3:00 p.m..

Example: