Fairmont State holds Dup15q and autism awareness event

Oct. 26--FAIRMONT -- Attending a volleyball game might be a fun way to spend an evening for most people, but a game Friday night at Fairmont State University meant much more for Tessa Quinlan of Mokena, Illinois and her son, Gavin.

Her son, 15, has from a rare syndrome called Dup15q, which results from his 15th chromosome being duplicated. As a result, he has characteristics of autism, developmental delay, speech delay, attention deficit hyperactivity disorder and is prone to have seizures.

The mother and son, along with other members of their family, were the guests of honor at the Lady Falcons volleyball game.

In addition to raising autism awareness, the event served as a fundraiser for the Dup15q Alliance, which is headquartered in Highland Park, Ill. Guests could purchase T-shirt sales and take part in other fundraising efforts for the Alliance.

The Dup15q Alliance "provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome," according to its website.

Quinlan, whose family has raised a lot of money and awareness for the Dup15q Alliance, said she was asked to attend the game by Fairmont State assistant volleyball coach Cody Jankowski. His mother is friends with Jankowski's mother, she said.

"He knew of what we did for the syndrome and because one of his seniors is going into special ed," she said. "They were just doing this and he thought of us. So, we took the trip out."

"He wanted to raise awareness in honor of Gavin because he knew how much we do, because it's a rare syndrome," she said.

Quinlan said her son's syndrome is worse than general autism because it has changed his DNA. Dup15q is so rare, it affects 1 in about 10,000 worldwide.

"And the numbers keep rising," she said.

For Quinlan, the travel time from Illinois was worth it because of Jankowski's invitation.

"It's a far drive, but we were very honored that he thought of us and that he thought of Gavin because we do so much for the alliance itself as a family," she said.

She noted the Dup15q Alliance holds a family conference every two years. The next one is in 2021 and will be held in Colorado. It was held this year in Texas. Quinlan serves on the Alliance board and runs the conference.

The event also featured a second viewing area in the Feaster Center Theater Room, which was free of game sounds and had minimal lighting, as well as a sensory stimulation room, ear plugs, fidget toy gifts, bean bag chairs and bouncy ball seating. Research has shown that child who have autism spectrum disorder can often be sensitive to bright lights and intense sounds.

The Alliance will use the money raised Friday for such things as education, research and conferences, according to Quinlan.

The Fairmont State volleyball program collaborated with The Disability Action Center of Marion County and the Ted Lindsay Foundation for the Autism Awareness Night.

Jankowski was not available for comment before press time.

Eric Hrin can be reached at 304-367-2549, or ehrin@timeswv.com.

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