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NYS assemblymember pushing for 'Down Syndrome Awareness Bill' to support families in need

Posted at 9:22 PM, Mar 21, 2023

BUFFALO, N.Y. (WKBW) — As World Down Syndrome Day comes to an end, the fight to bring resources to families continues.

GiGi's Playhouse Down Syndrome Achievement Center, in Buffalo, has partnered with the City to light the skyline blue and yellow to raise awareness for Down Syndrome.

According to the CDC, Down Syndrome remains the most common chromosomal condition diagnosed in the United States.

Each year, about 6,000 babies born in the United States have Down Syndrome, which means in about 1 in every 800 babies are born with this condition.

New York State Assemblymember Karen McMahon (D-Amherst) has been pushing for a bill to do

more than just raise awareness.

In order for families to have the support that they need, A4138 would require health care practitioners to provide: up-to-date information on life expectancy, clinical course descriptions, treatment options and hotlines available.

McMahon told Pheben Kassahun via Zoom that the bill was inspired by a mother who has a child living with down syndrome, who was facing a lot of challenges.

"When she first learned that her unborn child had this chromosomal abnormality, and was going to be born with Down Syndrome, she described feeling very alone and uncertain and uninformed. She felt that this would be really helpful if doctors and other healthcare providers were obligated to provide up-to date, evidence-based information about Down Syndrome to parents who are faced with that diagnosis," Assemblymember Karen McMahon said. "So many people don't know enough about it. When faced with it, they are unsure how to proceed, what life will be like for their child. So, we just want to provide all the support and information to help those kids and adults lead full and independent lives to the extent possible."

McMahon re-introduced the bill in the last legislative session.

NOTE: As of Tuesday night, the resolution recognized on adopted on World Down Syndrome Day.

RELATED STORY: Buffalo’s Down Syndrome clinic offers important help for families