| Page 3 January 2000 |
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| Skin
Deep
A North Woods camp for children with disfiguring skin diseases helps them discover the beauty of their own natures.
"It's absolutely empowering for the kids. And it's empowering for the parents, too. They see that their children are going to be able to grow up and cope." --Mark Dahl
Department of Dermatology |
TMark Dahl with Terry Peterson, 12, at Camp Discovery, the summer camp he started for kids with severe skin diseases. Peterson suffers from a skin disease called Lamellar ichthyosis, a rare inherited skin condition, in which scaly plate-like layers of skin are shed. |
Sitting across the lake from Mark Dahl’s summer cottage 30 miles north of Brainerd sits Camp Knutson, a camp for youth with special needs. In 1992, Dahl discovered that several weeks on the camp schedule were open. A light bulb came on. Camp Discovery was born.
Beginning in 1993, for one week in July each year Camp Knutson becomes Camp Discovery, a summer camp for children ages 10 to 13 with severe skin diseases. Dahl, head of the Medical School’s dermatology department, was president of the American Academy of Dermatology (AAD) when he developed the idea.
The goals of the camp, Dahl says, are to help the children have fun, build their self-esteem, and show them that they’re not the only people with skin disorders.
“It’s really an awakening for the children,” Dahl says. “They go back home with more confidence.”
“Nobody is excluded at the camp,” says Julie Winfield, a pediatric dermatologist at the University of Minnesota and chair of AAD’s Camp Discovery committee. “The kids feel accepted. They feel that people are not going to judge them based on how they look. People are going to allow them to just be kids.”
The AAD was instrumental in providing start-up funds, which were repaid through donations from AAD members, dermatological societies, allied health groups, industry groups, corporations, and individuals.
About 50 youth from 27 states attended the first Camp Discovery. All expenses for the youth—including airfare—are paid from contributions. For many of the campers, it marks the first time they’ve ventured from home.
The experience creates both opportunities and challenges.
Each camper has the opportunity to shed inhibitions, meet others with similar skin disorders—campers and counselors—and experience camaraderie while roasting marshmallows around a campfire. Activities include horseback riding, swimming, boating, arts and crafts, archery, and dancing.
Meanwhile, the staff—counselors, nurses, and dermatologists—has the challenge of making sure that each camper’s special needs are met. For example, the children with epidermolysis bullosa, one of the most severe skin diseases, require daily dressing changes. Epidermolysis bullosa, which ranges in severity, causes painful blisters that leave large raw patches on the skin. Some other campers require special diets or extensive medical care regimens, while others need to avoid the sun or heat.
By the end of the first Camp Discovery, it was clear that the opportunities were realized and the challenges met.
“It’s absolutely empowering for the kids,” Dahl says. “And it’s empowering for the parents, too. They see that their children are going to be able to grow up and cope.”
Although at week’s end, the campers return to their harsher world—one of teasing and exclusion—Winfield notes that the Camp Discovery experience builds within them a lasting self-confidence.
“It gives them inner strength,” she says. “Partly because they meet counselors who have some of the same challenges and skin diseases that they have.”
The success of the first Camp Discovery, held the second week of July, prompted the creation of a second camp in Pennsylvania, Camp Horizon, which runs the second week of August each year.
In addition, Winfield was instrumental in organizing a third camp for teens ages 14 to 16 with skin diseases. That camp is held in June each year at Camp Knutson in Minnesota. All told, the three camps host a total of about 165 youth each year. A fourth camp may open next year in California.
All in all, the camping experience helps kids realize that they can develop friendships, belong to a group, and grow up to have a fulfilling life.
For more information about Camp Discovery, contact Debbie Kroncke or Julie Winfield at the American Academy of Dermatology at 847-330-0230.
Marvin Bacaner, developer of Bretylium, contributes $500,000 for endowed chair
One
day in May,1967, just as he was leaving for a sabbatical year in Israel,
Marvin Bacaner got a phone call from a physician at Walter Reed Hospital
in Washington D.C. The doctor had read a journal article about a new anti-fibrillation
drug Bacaner developed, and wanted to try it on former President Dwight
Eisenhower, who had been hovering between life and death for days following
a severe heart attack.
Bacaner drove to the airport and put a supply of the drug, Bretylium, on a Northwest Airlines flight to D.C. Before hearing about the outcome, he himself headed off for Israel. When he got off the plane in Paris, he picked up a copy of France-Soir and read a front-page headline stating that Eisenhower had been saved by a new drug developed by a University of Minnesota researcher.
The rest, as they say, is history. Bretylium became a widely prescribed, life-saving heart drug. Bacaner enjoyed a successful academic career. The University earned more than $10 million in royalties from sales of the drug. And Bretylium even landed a feature role in a major Hollywood movie—it was the drug that saved E.T.’s life.
Last fall, the Marvin and Hadassa Bacaner Endowed Chair in Cardiovascular Physiology was established to set the stage for that kind of history to repeat itself. Bacaner and the University each contributed half of the $ 1 million endowment. Earnings will be used to recruit a researcher in the promising new field of molecular cardiology—understanding molecular mechanisms that regulate the heart in health and disease.
“All my life I have believed that when you get something, you should give something back,” Bacaner says. “The University has given me opportunities to do many things I have enjoyed.”
Bacaner says that if he were starting over, molecular cardiology would be his field of choice. Ultimately, he adds, research in this area could lead to gene therapy for heart disease. The new endowed chair dovetails neatly with President Mark Yudof’s plans to build up the University’s molecular and cellular biology research programs and encourage growth of biotechnology industry in Minnesota.
Now a professor emeritus in the Medical School’s Department
of Physiology, Bacaner, 76, still comes into his laboratory almost every
day.
“I love what I do,” he says. “To me a laboratory is an
adult playpen.”
Bacaner is working on an oral form of Bretylium that could be carried by people who have heart disease and taken if they experience chest pains.
“More than 150,000 people a year die from heart attacks before they get to a hospital,” he says. “This would give them a very good chance of getting to the hospital alive.”