Former New York State Congressman brings awareness to fatal brai - Binghamton-area News, Weather, Sports

Former New York State Congressman brings awareness to fatal brain disease

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BINGHAMTON (WBNG) -- Former Democratic Congressman Maurice Hinchey represented part of the Southern Tier for 20 years.

On Tuesday, his family announced he is diagnosed with a progressive fatal brain disease called Frontotemporal Degeneration, or FTD. His daughter Michelle said Hinchey was officially diagnosed a few years ago.

She said he felt it was time to go public with his condition to help friends and family understand what was going on, especially because he was misdiagnosed a few times.

Doctors describe FTD as a degenerative brain disease targeting the frontal lobe.

Symptoms include a change in personality, language function, and decline in movement.

The condition is often misdiagnosed as Alzheimer's, but doctors explained that there are three main differences.

First, FTD is not a memory disorder; it affects someone's personality instead. Second, the disease's onset is usually younger in life: the 40's, 50's and early 60's. Lastly, the disease is rare.

Susan Dickinson is the CEO of the Association of Frontotemporal Degeneration (AFTD). She said only about 50,000 Americans have the disease.

She explained that its rarity leads to many unknowns. "One of the things that's difficult about the disease is it's very hard to predict," she said. "There's no one way this disease begins and there is no one way that it progresses."

There are currently no approved treatments to slow the progression of the disease.

Dickinson said AFTD is researching ways to create a treatment drug.

In the meantime, Michelle said her father does what can to live in the moment,

"He greets each day with a smile and determination to have the best one that he can," she said.

More information about the disease can be found online.

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