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$100K towards fight against stuttering: Edmonton woman donates money to boost program which aided in her struggle with stuttering

When Jackie Schoenberger’s two-year-old son Pearse hadn’t started speaking, she was scared, but knew exactly where to go.

Schoenberger, who had a lifelong struggle with stuttering, knew that the team at the Institute for Stuttering Treatment and Research (ISTAR) could get her son the help he needed. After both she and her son received life-changing treatment at the facility, Schoenberger announced last year that she would leave $100,000 to ISTAR in her will.

“For me it was a no-brainer,” Schoenberger said, “It’s just a way of honouring people that made a really key role in my life and my son’s life.”

Though she had been exhibiting signs of stuttering from the time she was five years old, Schoenberger’s stuttering only began profoundly impacting her life in adulthood. In her 20s, Schoenberger’s stutter became so debilitating that she quit her job in communications.

“I would avoid everything, even saying my name was stressful,” Schoenberger said. “I couldn’t meet the expectation of perfection I had placed on myself.”

Having sought help for her stuttering through multiple unsuccessful avenues, Schoenberger enrolled in an extended therapy program at ISTAR in 1996. Attending sessions twice per week for six months, Schoenberger said that her therapy brought her back to the basics of speech.

“I basically learned how to talk again,” Schoenberger said. “Talking to people at a party seems so simple to do, but when you are someone who stutters, it can be hard to function in a world based on communication.”

Schoenberger said she knew that she didn’t want her son held back in the same way she was, and brought Pearse to ISTAR for an assessment. Pearse was diagnosed with apraxia, or an inability to articulate at all.

After receiving therapy at ISTAR, Pearse gained the ability to speak, but began stuttering around age five. Returning to the institute yet again, three years of therapy left Pearce with no trace of a stutter.

Now 14 years old and a junior high school student, Pearse plays multiple sports and is quick to point out the importance of identifying issues like his early in life.

“These things can destroy kids’ lives,” Pearse said. “If you can’t speak, you’ll have a really hard time with school, and life in general. So you really need to catch it early.”

Holly Lomheim, Acting Director, Clinical Director and clinician at ISTAR, agreed.

“With the little ones, it’s great if we can get them while their motor system can be held and managed,” Lomheim said. “We can actually reverse the trajectory of stuttering into their teens and adult years.”

Lomheim said there is no cure for stuttering, and many patients tend to relapse. Despite this, ISTAR is part of several ongoing research projects meant to determine several specific aspects of the disorder. Currently, ISTAR is involved in several projects involving brain imaging and genetic studies. These are meant to locate the specific anatomical and genetic mechanisms involved in stuttering.

“We do believe that stuttering is a genetically-based disability,” Lomheim said. “We haven’t traced it to a ‘stuttering gene,’ but we’re getting closer to finding out the parts of the brain that are involved.”

According to Lomheim, one of the main misconceptions about people who stutter is that they are inherently nervous, and may be less capable than others. In reality, the physiological disorder of stuttering causes the nervous symptoms.

“Our brains just don’t communicate with our mouths as well as other people,” Schoemberger said. “It’s nothing to be ashamed of, and in no way indicates lower intelligence or capability.”

As International Stuttering Awareness day fell on Oct. 22, Schoemberger pointed to the importance of initiatives like these in getting word out about stuttering.

“It can really affect your soul, you don’t become the person you are meant to be when you hold yourself back out of fear,” Schoemberger said. “With stuttering, your life is fear. People need to know that world-class facilities like ISTAR exist in Edmonton and that there are places to seek treatment.”

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