A major league donation

A major league donation

Johnny Damon Foundation supports new UF research center on Faroe Islands

By April Frawley Birdwell

Dr. David Weinstein (left) and Dr. Runa Olsen show a young patient where the Faroe Islands are on a map. With the help of a donation from the Johnny Damon Foundation, Weinstein has established a new research center to study glycogen storage disease on the island nation.

With the support of a Major League Baseball star, a new UF research center on an island settled by the Vikings could lead to breakthroughs about a rare genetic disorder and potentially change the course of care for high blood pressure and other common conditions.

College of Medicine researchers studying glycogen storage disease type III, which prevents children and adults from properly processing sugar stored in the body, have received support from the Johnny Damon Foundation to establish a new research center on the Faroe Islands, located in the North Atlantic Ocean between Norway and Iceland. Because of the isolation of the island chain, genetic diseases are common there, making it a fertile ground for researchers.

“We hear often about problems in sports, but we don’t frequently hear about athletes who go out of their way to help people,” said David Weinstein, M.D., a professor of pediatrics in the UF College of Medicine and director of the UF Glycogen Storage Disease Program. “We could not do this without Johnny Damon’s support.”

Type III glycogen storage disease is one of the rarest forms of the disease and is linked to all the places the Vikings settled more than 1,000 years ago. The disease occurs because of a genetic glitch that prevents the proper processing of glycogen, stored sugar the body uses as fuel throughout the day. In children, stored sugar accumulates in the liver and muscles, including the heart, often causing it to grow so large it cannot function.

One in 3,000 people on the Faroe Islands has glycogen storage disease, or GSD, compared with about one in 100,000 in the United States. In addition, one in 22 Faroese people are carriers for the disease, a statistic Weinstein suspects may be linked to other conditions prevalent there, such as high blood pressure and high levels of fats called triglycerides.

Working in collaboration with the Faroese government and scientists there, UF researchers will study not only glycogen storage disease but also how it may link to some of these other health problems.

“The textbooks all say when you are a carrier for genetic diseases, you are normal and have no effects,” Weinstein said. “We think the textbooks are wrong. We have evidence already from dogs that are carriers for GSD here that carriers of disease have mild manifestations. This study will help not only islanders, but also could show that we should be treating common disorders in a different way.”

If a link is found between glycogen storage disease and high cholesterol, the research may show that precise doses of cornstarch —the common treatment for some types of GSD — could be safer and more effective to combat cholesterol in carriers than the medications currently used, Weinstein said.

Weinstein started working with patients on the Faroe Islands in 2008. With his help, the health of children on the island with the disease has greatly improved, said collaborator Runa Olsen, M.D., a pediatrician at Queen Alexandrine’s Hospital on the Faroe Islands.

With no other foundations funding type III glycogen storage disease research, the Johnny Damon Foundation’s continuing support and $16,000 donation earmarked specifically for the new research center is particularly significant, Weinstein said.

Damon currently plays for the Cleveland Indians but is perhaps most well-known for his play with the Boston Red Sox when the team won its historic World Series in 2004 and for years with the New York Yankees.