Park City children to attend Juvenile Diabetes Research Foundation’s 2017 Children’s Congress
They will travel to Washington, D.C., to lobby congressional leaders for funding
July 18, 2017
Though she is only 14, the magnitude of the opportunity does not escape Sophie Adrian.
She and her younger brother, Alex Adrian, both Type 1 diabetics, were chosen to represent Utah at the Juvenile Diabetes Research Foundation's 2017 Children's Congress. Next week, they are scheduled to meet with Utah's congressional delegation in Washington, D.C., and attend a congressional hearing to encourage lawmakers to re-up current levels of federal funding for diabetes research.
Sophie first learned the importance of civic engagement when she and her brother participated in an effort that helped lead the Park City School District to hire more school nurses to aid students with medical conditions. Now, she's eager to take those lessons to a national stage, where she and Alex have a chance to affect a congressional decision that will have monumental consequences for people across the country with diabetes.
"I'm really excited," said Sophie, who is heading into ninth grade at Treasure Mountain Junior High School. "It's a chance to change something and make a difference in the world and actually do something. Not everyone has this chance. It's not every day you get to do this, so it's special."
Sophie and Alex have spent months preparing for the Children's Congress after they were selected to attend in late winter. They each made a video and scrapbook detailing their day-to-day experiences with diabetes and what the effort to find a cure — or better equipment to manage the disease — means to them. The videos and scrapbooks were sent to Utah's congressional delegation this spring.
"I think it's great," said Alex, who's going into second grade at Trailside Elementary School and described diabetes in his video as the worst monster in the world. "I want them to figure out a cure for diabetes."
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The experience will also be poignant for their parents. Their mother, Christina Miller, also has Type 1 diabetes and is hoping the Children's Congress will provide lawmakers with a new understanding of the disease. When the debate about school nurses was happening in Park City, she said students explaining to the school board exactly what living with diabetes made a big difference.
"To be able to tell your story is incredibly powerful," she said. "It's not as easy as getting a shot in the morning, then you're good to go for the day. That's a pretty powerful thing they're doing."
Trevor Adrian, Sophie and Alex's father, does not have diabetes. But it's shaped his life, too, as he's helped his wife and children manage the disease, which at times can be all-consuming.
"It's awesome that we have been invited to put a face, a Utah face, in front of the Utah decision makers," he said. "We're going all the way to D.C. with these two awesome kids, and they're going to be able to tell their story. Hopefully, the representatives are going to be able to translate it and act on it."
The Juvenile Diabetes Research Foundation is using its Children's Congress to ask lawmakers to commit another $300 million in research funding over the next two years. Given the advances the medical community has made in helping people with diabetes manage the disease in recent years, it's not a stretch to say the outcome of the Children's Congress will impact — one way or another — hundreds of thousands of people across America.
Sophie and Alex have been fortunate to benefit from the advances they've seen in their lifetime — such as insulin pumps and continuous glucose monitors — but if the funding is approved and a cure is eventually found, it would be nothing short of life changing for them and their family.
"It would mean sleeping through the night," Miller said. "It would mean sending them to school without having to worry about them all day. It would mean Alex finally getting to go on a play date by himself because the parents don't know how to control his diabetes and aren't comfortable controlling it. It would mean saving a lot of money because diabetes is very expensive, even if you have research."