Young Activists Lobby for Greater Diabetes Research

Juleah Cordi was in fifth grade when she was diagnosed with Type 1 diabetes. She had just canceled her 11th birthday party after getting sick with what seemed to be a bad flu. A week later, she was lying in a hospital bed, learning how to monitor her blood sugar, inject insulin and count carbohydrates -- skills she would need for the rest of her life.

Now 15, Juleah said that her diabetes has caused her to grow up “much too fast.”

“It is so much added responsibility,” said Juleah, who lives in Live Oak, Calif., north of Sacramento. “While most teens only have to worry about grades and friends, I have to make sure I have my injections, I know my sugar levels. It’s a part of my life every single day.”

This week, Juleah was one of 200 diabetic children from across America to converge on Capitol Hill. They were there to tell their stories and plead for more funding for diabetes research.

The Juvenile Diabetes Research Foundation International played host to the Children’s Congress, which included a hearing at the Senate Committee on Governmental Affairs as well as meetings between children and legislators. The event wrapped up Wednesday.

“We’re hoping we have an impact on Congress and put a face on the diabetes struggle,” said Linda Goerzen, whose two children were each diagnosed with Type 1 diabetes when they were a year old.

Andrew Goerzen, 14, and Jennifer Goerzen, 17, traveled from Dinuba, Calif., to Washington, D.C., to talk about living with the disease’s side effects, such as vision problems and body pain.

“Going to Washington makes me feel like I’m doing my part to help myself and other people,” said Jennifer. “I’m not just sitting around and waiting for a cure.”

The foundation is asking Congress for a 10% increase in funding for the National Institutes of Health. A House subcommittee voted last week to increase funding by 2%. Funding for research is very competitive. And Type 1 diabetes, while a serious disease, is considered by some lawmakers to be a lower priority than cancer or other diseases that are less controllable.

The young activists and their families are hoping that their stories may persuade Congress to change that.

“Our challenge is to demonstrate to Congress that the investment today, while it may be a large payment, over the long haul will result in economic and emotional savings,” said Rik Bonness, this year’s chairman for the Children’s Congress. Bonness, who was a linebacker for the Oakland Raiders in the late 1970s, has two children with diabetes.

About 250,000 children in the United States are diagnosed with Type 1 diabetes, and rates of all types of diabetes are on the rise. “I want to do as much as I can to find a cure,” Juleah said. “The more people know about the disease, the more people can help.”