Family raises money to fight Tourettes


Middle school can be hard enough for a teenager. But if a teen is “different” in any way, it can be a nightmare. So imagine what seventh grade was like for Jason Greenberg, 15, who has the neurobiological disorder Tourette Syndrome.

“My Tourettes was the worst then, when I also had my bar mitzvah,” Jason says. “I had a bunch of tics” –involuntary, rapid, sudden movements and/or vocal outbursts — “like my voice would crack so you couldn’t hear what I was saying. I’d scream really loud. I jerked my head back and forth. I had a click in my throat. And I had Obsessive Compulsive Disorder.”

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As a result Jason missed a lot of school. “I couldn’t concentrate and I got really angry,” he says. “A lot of friends I thought I had weren’t really friends, so I was pretty much without friends for seventh grade.”

But, “it made him an incredible kid,” says his grandmother, Myrna Meyer, chair of the St. Louis Holocaust Museum and Learning Center, past president of the Women’s Division of the Jewish Federation, former board member of the Jewish Community Relations Committee, trustee of the St. Louis Jewish Light board and former board member of the Central Agency for Jewish Education and the Jewish Community Center, among other achievements.

Myrna did not sit idly by as her beloved first-born grandson — as well as his parents, John and Debbie Greenberg and sister Elizabeth and grandfather Dr. Jay Meyer — struggled with the challenges of Tourettes. With her decades of volunteer experience and remarkable organizational skills, Myrna enlisted a committee of 120 to put together the Inaugural Benefit for the Tourette Syndrome Association that will be held on Saturday, Sept. 8 at the Khorrasan Room at the Chase-Park Plaza.

The Event

“I was reading a Tourette Syndrome newsletter and saw that there were fundraisers in California and New York, and I thought, ‘Why not St. Louis?'” Myrna recalls. “So I called Judit Ungar, the president of the national Tourette Syndrome Association, and told her I’d like to do a fundraiser here.” Myrna says Judit “Googled” her, and after seeing Myrna’s impressive resume, gave her the go-ahead for the event. “This was more than a year ago,” she says. “It takes a long time to put one of these fundraisers together” — especially with no local professional staff.

More than 400 are expected to attend the event. Individual tickets are $180 and tables are $3,000. Proceeds will help support Tourette Syndrome research.

The fundraiser will feature dining and dancing to the music of The Encores. Carol Daniel of KMOX Radio will be the emcee.

“We also will have some very significant door prizes, including a week’s stay in a beautiful two-bedroom apartment in Paris, plus baseball tickets, a stadium tour and special gifts from Saks Fifth Avenue and Nickelodeon, and many more,” Myrna says. “Since the event is a first and because people are generous enough to attend, we decided to just give away the prizes instead of auctioning them.”

The benefit will feature notable speakers, including Judit Ungar of TSA. Guests also will hear from one of Jason’s doctors, Bradley Schlaggar, M.D., Ph.D., assistant professor of Neurology, Radiology, Anatomy & Neurobiology and Pediatrics; and Director, Pediatric Neurology Residency Program, Washington University School of Medicine, St. Louis Children’s Hospital. He recently received a major grant from the Tourette Syndrome Association in support of his research on neuroimaging to better understand the brain’s executive control networks in people with Tourettes.

Dr. Schlaggar says in his talk at the fundraiser he plans to emphasize the collaborative nature of Tourette Syndrome. “I’m the doctor for a bunch of kids with Tourettes but I’m not the sole source of treatment,” he says. “That requires a concerted effort by physicians, nurses, parents, teachers, relatives and others, because with Tourettes there are so many issues and implications.”

One who knows all about those, and who also will speak at the fundraiser, is former St. Louisan Brad Cohen, who has Tourette Syndrome. “A lot of the people coming to the event might not know what Tourettes is, so it will be a night of education, awareness and an opportunity to raise some funds for a good cause,” Brad says. He plans to help raise awareness by telling his personal story — how teachers humiliated and punished him for “being a troublemaker,” he says, and how he vowed to become a teacher who looked at students’ strengths, not their weaknesses. Brad fulfilled that vow, and more: he recently was named Georgia Teacher of the Year and is the author of Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had. Last summer he told his moving story to a worldwide audience on Oprah Winfrey’s television show.

Brad will have the honor of being introduced at the fundraiser by Jason. The two met when Brad was visiting family in St. Louis, when Jason’s Tourettes symptoms were at their peak. “I had a chance to meet him and his family and talk to him and it really helped me,” Jason says. “He was an inspiration to me.”

Brad recalls sharing his story with Jason and pointing out the importance of being honest.

“I told him, you have to let people know what’s going on with you,” he says. “Also I advised him to get involved at school and people will see your strengths, not just that you’re a kid with Tourettes. I told him to try to have a positive attitude and keep a smile on his face, and remember things will get better. A big theme in our lives is perseverance,” Brad adds. “You can’t just stop and make excuses about what you can’t do. You have to do the exact opposite and prove how special you are!”

Brad believes he and Jason formed a bond. “I think Jason bought into what I was saying and it validated the way he was living his life. I hoped he would take my suggestions and figure out how to make them work for him,” he says. “Jason’s mother, father and doctors can tell him things over and over but they haven’t been where he has been.”

The Diagnosis

The sensationalized Hollywood version of Tourette Syndrome — the inappropriate use of language (called coprolalia) actually affects a small percentage of people with the disorder, Myrna explains. “Unfortunately that’s most people’s impression of Tourettes,” she says. There’s no exact figure for how many people have the disorder, but the best estimate is that it affects about 200,000 individuals in the United States — people from all races and ethnic groups.

“At least one child in every school district has it,” Myrna says. “And there are many cases that aren’t diagnosed because that takes a long time.”

Jason’s father, attorney John Greenberg, advisory board member and past president of the St. Louis Jewish Light , says, “It was a gradual thing. Jason’s Tourettes really didn’t interfere with his ability to enjoy life or interact with kids or succeed academically or in sports until around sixth grade. When Tourettes became an issue in terms of his goals and desires, his ability to perform and his sense of self worth,” John says, “that’s when it became very disconcerting for us and very debilitating for him.”

To come up with a diagnosis, Jason says his doctors “watched what I was doing,” and eventually they determined it was Tourette Syndrome.

“It wasn’t a relief but there was an answer,” says Jason’s mother, Debbie, director of college counseling for College Bound. “At least we had a name for it, and a web site to go to. I had a path to follow. There have been certain angels and signs along the way. And Jason’s bar mitzvah — he powered through it, despite the tics and the other assorted goodies. But God did something. We were all able to enjoy it.”

Over the years Jason has taken a variety of medications. Many have had side effects; one drug caused Jason to put on quite a bit of weight, which he has since lost.

“They experiment,” Myrna says.

Dr. Schlaggar explains, “With Tourette Syndrome, the burden of the tics seems to increase in the pre-adolescent time. And then for many patients, over time probably more than half the tics diminish. There are lots of peaks and valleys and setbacks,” he notes. “That’s a very common scenario.”

Frequently, the tics themselves are not “the centerpiece of the problem,” Dr. Schlaggar says. Instead, for about half the adolescents who have Tourettes, it’s the co-morbid conditions — anxiety, obsessive compulsive disorder, depression, attention deficit disorder and learning disabilities — that can have the most negative impact. However, in the last generation, Dr. Schlaggar says, the most important insight has been the recognition of the co-morbid problems. “Classroom adjustments can make a huge difference for the kids with Tourettes,” he says.

Solid Support

“What’s interesting about Jason is that he’s a real fighter. He’s always been willing to take this on and have a pretty good attitude about it,” John says. “By the end of eighth grade things got better because he willed it to be, although he had many of the same issues. He just rose above it. But,” John adds, “he didn’t do it all by himself. He has some wonderful doctors. Plus his mother and grandmother are real forces!”

That’s the same word Debbie uses to describe her mother, Myrna — “a force.” “She said St. Louis needs to do something for Tourettes. She was relentless,” Debbie says. “I think Jason gets a lot of his power through her. She’s been his cheerleader.”

If Myrna is the “dynamo,” Debbie says, her father, Jay Meyer, is “the calm in the storm.”

“He’s a psychiatrist, which has been a huge benefit. He’s up on all the latest treatments and he has so many connections in the medical community,” she says. “When all of us were freaking out, he was equally upset but he had great perspective. And Jason’s sister!” she adds, “You can’t ask for a better sibling in a time of crisis.”

From the start, Elizabeth, age 12, rallied her friends in support of her brother.

“I felt bad for him,” she says. “He’d make weird noises and I’d take my friends into my room and explain Tourettes to them.” They included Jason in their activities like sports and cards and board games.

“He was happy about it,” Elizabeth says. “Now he’s better, and we play video games and basketball together. It made us become closer as a family.”

Myrna agrees.

“Everyone thinks they have a unique family but I KNOW we do!” she says. “The support that we have all felt and given has been incredible.”

Looking Ahead

“Jason feels stronger now and ready to begin anew,” Debbie says. He recently started his freshman year at high school. “I’m going to try and play ice hockey, like I used to do, and maybe join the debate club and work on the newspaper,” he says. “I’m working on finding some new friends too.” Ultimately Jason thinks he’d like to be an engineer in an environmental field, or a computer programmer. “There’s a bunch of stuff I’m interested in,” he says.

As for his grandmother, Myrna is busy putting the finishing touches on the Sept. 8 fundraiser. “What’s nice is that a few people have bought tables and have donated them back to us. That allows us to send complimentary tickets to educators so they can come learn more about Tourette Syndrome,” she says. “It’s all about awareness.”

For more information about the Inaugural Benefit for the Tourette Syndrome Association, call 314-432-1863.