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Health Talk Recommends: A Cuddly Advocate

Editor’s note: This article originally appeared in the August issue of the University of Minnesota’s Children’s Health newsletter. The complete article can be found here.

A small, cuddly teddy bear is having a big impact in research funding for cystic fibrosis around the world, including here at the University of Minnesota.

The teddy bear, Burke P. Bear, is named in honor of Burke P. Derr, who died two days before his 19thbirthday in 1997 from complications of cystic fibrosis (CF), a genetic disorder that causes mucus to build up and clog some organs of the body, primarily the lungs. To date, Burke P. Bear has traveled 47 states and 23 countries raising awareness of CF.

Burke P. Bear is the world-traveling mascot for PACFI that delivers research funding to leading cystic fibrosis researchers.

Today Burke’s memory lives on through the work of his father, Bob Derr, for Pennsylvania Cystic Fibrosis, Inc. (PACFI), and the CF researchers it supports, including Antoinette Moran, M.D., a renowned pediatric endocrinologist in the University of Minnesota Medical School’s Department of Pediatrics.

Despite Burke’s active and spirited lifestyle, his CF landed him in the hospital three times a year for two to three weeks at a time. Some of his friends also had cystic fibrosis-related diabetes (CFRD), which affects about 20 percent of adolescents and 40 to 50 percent of adults who have CF.

In the past, people with CF who developed diabetes faced a much higher mortality rate than those without diabetes. Gradually, as doctors have become more aggressive about screening for diabetes, the number of deaths stemming from CFRD has decreased.

Much of that progress is thanks to Moran’s work. She pioneered CFRD research during her residency at the University of Minnesota in the 1980s when she noticed that an extraordinary number of CF patients were developing diabetes.

And much of Moran’s research progress is thanks to PACFI—an independent, all-volunteer 501(c)(3) nonprofit organization—which has supported her CFRD studies for the last decade.

“We wanted to give to a leading researcher in CFRD,” says Derr. “We really appreciate what she is doing because in recent years, CFRD has been problematic. People with CF are living longer, and many get diabetes as young adults.”

Moran is putting the organization’s money toward a study examining whether the trends in mortality rates in CFRD patients have continued to decrease over the past five years.

“In order to get large grants from the National Institutes of Health, you have to have preliminary data to convince the reviewers that the project is worthwhile,” says Moran. “The PACFI funds have provided us with ‘seed money’ to do small preliminary studies, the data from which have then leveraged larger grants. This funding has really helped me move CFRD research forward.”

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