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A cuddly advocate

As a special gift for Burke Derr, a lifelong teddy bear collector, his friends asked a teddy bear company to create a bear for Burke. The original Burke P. Bear arrived at the hospital five days before Burke died. Today Burke P. Bear is the world-traveling mascot for PACFI.

Teddy bear delivers research funding to leading cystic fibrosis investigators around the world, including one at the University of Minnesota

He has toured 47 states and 23 countries to increase awareness of cystic fibrosis (CF)—a genetic disorder that causes mucus to build up and clog some organs of the body, primarily the lungs—and he gets hugs everywhere he goes. This furry advocate is Burke P. Bear, a cuddly teddy bear named in honor of Burke P. Derr, who died two days before his 19th birthday in 1997 from complications of CF.

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.

Burke was a pretty typical teenager, his dad says—he played soccer, was a member of the National Honor Society, and was voted “most spirited” by his high school class.

But Burke’s CF landed him in the hospital about 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.

Toni Moran, M.D.

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 has used the PACFI funding to get fledgling research ideas off the ground and has since published the findings from six PACFI-supported studies. Currently, 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.”

In addition to funding novel CF research, PACFI helps Pennsylvania families affected by CF buy things like air conditioners, nebulizers, medications, and other CF-related needs that are not covered by insurance.

It all holds a special meaning for Bob Derr, of course, and for everyone who knew Burke. “To lose someone you love and to have something like this come out of it is remarkable,” Derr says.

Burke always wanted to do something to help cure CF, his father says. “He would have become a researcher,” Derr says. “The teddy bear is helping to promote what he wanted to do: promote long-term care and help cure CF.”

By Grace Birnstengel

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