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Type 1 Diabetes - TrialNet e-news - Fall 2012

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From Coast to Coast, Kids Join Teplizumab Prevention Study to Help Find Answers

Dillon Berg

Dillon Berg

“The 14 days go a lot faster than you think. Knowing I could help is kind of cool because not everyone gets to do this.”-Dillon

Fourteen-year-old Dillon Berg, of Kent, Washington, is participating in the Teplizumab Prevention Study at Benaroya Research Institute in Seattle. Because brother Aiden, 11, and sister Heather, 18, were diagnosed with the disease years earlier, mother Toni had been especially interested in getting Dillon screened by TrialNet.

The Bergs learned about TrialNet screening at the American Diabetes Association Expo in Seattle. When Dillon was first screened, he showed no markers for the disease. He continued getting yearly blood draws until antibodies appeared, signaling an increased risk for diabetes. Then he was tested every 6 months. When the number of antibodies rose, the Bergs were contacted about the Teplizumab Prevention Study.

Dillon’s parents looked closely at the study, its risks and potential benefits. They decided that if the drug could possibly delay the onset of the disease—by even 6 months to a year—it would be worth participating in the study. Getting Dillon to agree to two weeks of infusions was tougher.

“He had just signed up for soccer, and it was a big deal,” remembers Toni. “He had a long talk with his sister. She told him, if she could turn the disease off for 1 day, she’d do the 14 days of infusions. Once he started to do the study, he realized it was easy. He is such a trouper.”

“The nurse who did the blood draws, Michelle (Cross), was like SuperNurse—quick, professional and kind. The staff was fabulous at keeping Dillon calm and making him comfortable. He loved ordering dinner—getting to pick what he wanted. They were very kid-friendly but didn’t treat him like a baby,” she explains.

Dillon concluded, “The 14 days go a lot faster than you think. Knowing I could help is kind of cool because not everyone gets to do this.”

Zach Clinton and his parents

Zach Clinton and his parents

Zach wanted to join the study so that he could help other people. He said, “If I don’t do it, who will?”

Ten-year-old Zach Clinton of Gastonia, North Carolina, was first screened by TrialNet at a JDRF event at a North Carolina amusement park. When his results signaled an increased risk of developing type 1 diabetes, mother Ziana said their first reaction was, “Kid number two—here we go.” Their son Ryan, age 12, was diagnosed three years earlier. He was the one who talked Zach into being screened.

The Clintons went to their closest TrialNet physician, Dr. Bryce Nelson in Greenville, South Carolina, for additional testing. There, they learned Zach was eligible for the Teplizumab Prevention Study at Vanderbilt University Medical Center in Nashville, Tennessee.

"The first thing we considered was whether this was something that God wanted us to do,” said Ziana. “Next we looked at the side effects, which were minor and known. The drug itself had already been well tested, and our pediatrician at Gastonia Children’s Clinic was very positive about it. The only downside we could see was the commitment to 14 days out of our lives.”

Zach wanted to join the study so that he could help other people. He said, “If I don’t do it, who will?”

When asked how it was to take part in the study, Zach replied, “It was a breeze.”

When Zach returned to school, he was up-to-date with all his classes. “His teachers at First Wesleyan Christian School put all his lessons and homework together for him before we left,” says Ziana. “He’d do his schoolwork during the infusion, and then we’d do something fun in the afternoon.”

While in Nashville, Zach and his family enjoyed visiting several area tourist attractions. Because he loves science, his study team arranged a special visit to the Diabetes Research Lab of Vanderbilt researcher Maureen Gannon, PhD. He had the chance to see islet cells under the microscope and visit with the laboratory staff.

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