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From 'Whatchamacallit' to Funshine
New Camp Starts for Children Infected with HIV

By Rich McManus

On the Front Page...
Unless you just came to NIH a week ago, you probably know at least something about Camp Fantastic. For the uninitiated, it's a week-long slice of August turned into terrific summer camp for children -- many of them Clinical Center patients -- with cancer, and has always been powered by the freehearted and funloving side of the National Cancer Institute -- its Pediatric Branch and associated caregivers. It began 15 years ago at a 4-H campground near Front Royal, Va., and has evolved into a year-round, family-centered program that worries not just about the child with cancer, but also about the healthy sibling who wonders where all of mom and dad's attention went. And much more.

Continued...
Organized by nonprofit Special Love, Inc., of Winchester, Va., which was founded by the parents of a child who succumbed to cancer, Camp Fantastic is a household word at NIH. You can give CFC dollars each year to Special Love. You can chow down at the annual Camp Fantastic Barbecue, held each June on the patio outside Bldg. 31. You can ski with the camp kids in winter, run in road races designed to raise funds for them in the fall, play in a softball tournament benefitting them in summer, and attend plays in Masur Auditorium that will put cash in their kitty. You can buy their T-shirts at the R&W store, where General Manager Randy Schools is not just a Special Love charter member, but also one of the camp's most avid summer funsters.

The Bethesda Little Theatre (formerly the NIH R&W Theatre Group) recently made a gift of $1,000 to Camp Funshine, a new camp for kids with HIV that is growing under the auspices of Special Love, Inc., which also sponsors Camp Fantastic each summer for kids with cancer. On hand for the presentation were (from l) Brian Campbell of the Substance Abuse and Mental Health Services Administration (SAMHSA), Michael Bergin of Camp Funshine, Teddi Pensinger of SAMHSA, R&W General Manager Randy Schools, Alice Page Smyth of the Clinical Center, and Michelle McGowan of the National Eye Institute.

It makes perfect sense, then, in an age of cloning, to recreate the success of a camp for youngsters with cancer by starting a summer camp for kids with another fearsome diagnosis -- human immunodeficiency virus (HIV).

A few years ago, when NCI's Pediatric Branch began accepting youngsters with the AIDS virus for treatment, some of the kids quite naturally wanted to attend Camp Fantastic, which is the premier social event of the year for the branch's patients.

In 1994, Dr. Philip Pizzo, another Special Love godfather who until last summer was chief of NCI's Pediatric Branch, and his colleagues decided there should be a special camp for kids with HIV.

The folks at Special Love welcomed the idea of hosting a new camp. Organizers included Kathy Russell and Michael Bergin of Georgetown University, both of whom have close professional ties to NCI and Pizzo. They pitched the idea of a brief trial run -- a weekend-long camp dubbed "Camp Whatchamacallit" -- just to see if they could pull it off. Their first effort, in 1994, was successful, with 13 families, all of them from the Clinical Center.

The following year, 1995, plans for a second weekend camp bogged down and not enough families enrolled in time for the event to take place. Because it was so heavily committed to its established Camp Fantastic, and because turnout was so low for the new camp, Special Love withdrew its sponsorship of what the kids had renamed Camp Funshine. No hard feelings, it just seemed to be a nonstarter.

Chastened by their sophomore slump, Russell, whom Bergin describes as "passionate about children with life-threatening illnesses -- she recognized a tremendous need to reach out to the growing HIV population," and Bergin decided to pool their talents: She is a former administrative officer at NCI who now is associate director for planning and administration of the Lombardi Cancer Center at Georgetown; Bergin, a 7-year veteran counselor at Camp Fantastic, is operations manager at the Lombardi Center. Together, they decided to turn what had been known as Whatchamacallit into something worthy of a name.

Aided by counselor-turned-fundraiser Jodi DeOms McKay (who, until last year, worked for R&W) and a host of Special Love veterans, they ran a second weekend camp in June 1996 that rivalled the first, proving to Special Love that they had the will and the ability -- and the fundraising moxie -- to create something new. "It was wildly successful," says Bergin, who was recently on campus to accept a check for $1,000 donated to the new camp by the Bethesda Little Theatre (formerly the NIH R&W Theatre Group). "We had 23 families, including 60 kids who were either infected or affected by HIV.

"It's very family-focused," said Bergin, "so they have time together away from the trials and tribulations of the disease. A lot of the programming and the people who run it are from Camp Fantastic, so it's based on what we've done with cancer kids."

Novel issues with an HIV camp include providing bottled water for campers, whose immune systems could be harmed by bacteria in tap water. Disclosure of illness is another major issue -- in some families, the child knows only that he is sick, and hasn't been told, perhaps because he isn't old enough, that he has HIV. Sometimes even siblings don't know what the diagnosis is. Privacy issues extend beyond the family as well.

"Publicity at Camp Funshine is much different than Camp Fantastic," explains Bergin. "We are trying to provide a respite for these families, far away from the isolation and societal stigma that they may feel at home. We have a tremendous respect for their privacy. We provide an environment free from judgment, where everyone is in the same boat. They can draw strength from each other and our wonderful staff."

The camp doesn't focus on the diagnosis at all, explains Bergin. "It isn't even mentioned. It's not on our camp T-shirts, it's not on our literature, and it's not part of the program. We do provide resources for the family, however. Last year we had a social worker from a clinic in Washington, D.C., and Dr. Lauren Wood of NIH, who conducted voluntary sessions for the parents and caregivers. They are also available throughout the weekend to provide information one-on-one, as it is needed. The onus is on the parents to seek us out, we do not force them to talk about anything."

Convinced that Funshine was in the hands of seasoned pros, Special Love welcomed it back into its fold of official programs last November. It will be conducted at the 4-H center June 6-8 and Oct. 31-Nov. 2 in 1997, and for 1998-1999 intends to expand to a full week.

"We don't want to tax the (financial) resources of Special Love too much," said Bergin. "We're similar to where they were with Camp Fantastic 10 or 15 years ago."

Whereas Camp Fantastic costs about $45,000 to run for a week each summer, Camp Funshine will require almost $100,000 in 1998 for two weekend editions, plus a full week, he reported.

For the moment, he is delighted to accept checks from such groups as the Bethesda Little Theatre. "Their contribution is absolutely wonderful. It's neat to have support at this level," Bergin enthuses. "They worked hard to raise the money, and it will make a big impact on our program."

Last year a swim-a-thon in Columbia, Md., garnered $2,200 for Camp Funshine, and McKay managed to convince pharmaceutical company Upjohn-Pharmacia to kick in some $20,000.

Bergin is now a Special Love board member and would like nothing more than to realize a lifelong dream of running a nonprofit foundation or clinic that benefits kids. "I love the interaction with the children and the families," he says. "I am very fortunate to be in a position to make a difference."

Ironically, he nearly blew off his chance to launch what has now blossomed into his vocation. In spring 1989, on the morning after his graduation from St. John's High in the District -- and associated wee-hour partying -- he was in no mood to keep an 8 a.m. interview with Pizzo at NCI. But his mom insisted that he take the first step toward a summer job at NIH by showing up. A College Park, Md., neighbor who worked at NIH, Carl Prosperi, had set up the appointment. Bergin reluctantly arose and met Pizzo. The two hit it off, and Bergin agreed to work for the Pediatric Branch and serve as a counselor at Camp Fantastic. "Basically, I've been the guest who will never leave," he laughs now. At Georgetown since 1994, he will soon have both an M.B.A. and a wife.

"I met my fiancee at Camp Funshine last year," he says. "It goes to show that when you do what you love in life, good things come to you." On June 14, Bergin will marry Jeanne Higgins, a veteran HIV camp counselor who was also once an NCI Pediatric Branch volunteer. Interestingly, Bergin nearly turned her down as a camp volunteer before they ever met. "She kept calling and calling, and I told her we had enough counselors. Finally I relented, and I'm glad I did." They were engaged in front of the camp fire circle last October at a Special Love family weekend.

A former college basketball player at LaSalle, Bergin knows coaches and players at both the college level and the NBA who he feels comfortable tapping for help at Camp Funshine. During college he realized that his future lay in helping kids rather than starring as an athlete, so he never let friendships falter. "My coach at LaSalle, Speedy Morris, still sends us balls and T-shirts," he proudly reports.

Still very much the kid himself, despite being 6'4" and weighing 220, Bergin remembers the weekend he hired a hot air balloon to visit Camp Funshine. "Just to see the kids' faces was terrific," he recalls wistfully.

Must have been like the look on his own face as he watches Camp Funshine lift off the ground.