Weekly Feature



2018-02-14 / Lifestyles

Will East student to educate senators about Tourette syndrome

by HOLLY N. LIPKA Reporter


Miki Brauch, left, will speak with senators and representatives about Tourette syndrome in Washington, D.C., this month. Brauch sits next to Susan Conners, founder and president of the Tourette Association of Greater New York State. Miki Brauch, left, will speak with senators and representatives about Tourette syndrome in Washington, D.C., this month. Brauch sits next to Susan Conners, founder and president of the Tourette Association of Greater New York State. Miki Brauch, a junior at Williamsville East High School, has been named a 2018 youth ambassador by the Tourette Association of Greater New York State.

With other youth ambassadors from across the country, Brauch will visit Washington, D.C., on Feb. 27 to attend a two-day training program and speak with senators and representatives about Tourette syndrome.

The training program will show youth ambassadors how to be an advocate for those with TS and how to give a concise presentation about the disorder.

“One of our biggest goals is to educate everybody and anybody we can about this disorder,” said Susan Conners, founder and president of the Tourette Association of Greater New York State. “It’s one of those things that people don’t learn about, but it’s very common.”

According to the Tourette Association of America, TS is a neurobiological disorder characterized by tics — rapid, involuntary movements or vocal outbursts that occur repeatedly.

Symptoms change periodically in frequency and severity, sometimes disappearing for weeks or months at a time. Motor tics could be eye blinking, head jerking, shoulder shrugging and facial grimacing. Common vocal tics are throat clearing, sniffing and tongue clicking.

Around 200,000 Americans have the most severe form of TS and as many as one in 100 exhibit milder symptoms, according to the National Institute of Neurological Disorders and Stroke.

Brauch was diagnosed with TS when she was in seventh grade but began having symptoms in fifth grade.

“She started clearing her throat, and I wondered if she had a cold, but then it stopped,” said Midori Brauch, Miki’s mom. “I didn’t give it a second thought until it started up again when she was in grade seven. I spoke with her counselor at the time, and she directed me to Susan.”

In 1984, Conners founded the Tourette Association of Greater New York State after living several years with undiagnosed Tourette’s.

The chapter serves more than 800 families across the state and provides educational resources and support groups for those with TS and tic disorders. Members help children and teens live with their tics, understand factors that improve or worsen the tics and improve self-esteem and coping skills.

The chapter also hosts activities and events including bowling parties and its annual Camp Ticapalooza, which is a weekend camping trip on Keuka Lake.

The Brauch family joined the chapter shortly after Miki’s diagnosis.

“It was nice to meet other people like me and talk with people who understand,” said Miki Brauch.

After Brauch completes her youth ambassador training in D.C., she will teach others about TS by presenting at local schools, sports leagues, Scout troops, camps, after school programs and youth panel discussions.

“It’s necessary to educate for yourself and others because it’s not something to be afraid of.”

For more information about the Tourette Association of Greater New York State, visit tsa-gnys.org.

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