Founder of Camp for Kids Aims to Reach Thousands More

A table full of teenage girls shouts at him in singsong unison: “Good morning, Noodle!”

“Noodle” is Neil Willenson, the founder and chief executive officer of Camp Heartland, a national nonprofit organization

that for the past 14 years has provided programs for children who have HIV or AIDS as well as for youngsters who have lost parents and other relatives to the disease.

“Good morning!” he responds, matching the girls’ enthusiasm.

It is 8:30 a.m. on a summer Saturday, and more than 50 campers, ages 7 to 15, are giggling, dancing, and bouncing in their seats as they await breakfast.

Roughly half of the children here have AIDS or the virus that causes the disease. About half of the counselors were once campers.

At 36, clad in cargo pants and a polo shirt, the ever-smiling Mr. Willenson could almost blend in with the camp’s staff members, most of whom are in their 20s. He’s got an action-packed day ahead. This afternoon, a group of donors will visit the camp. First, though, he will present a new long-term plan to Camp Heartland’s advisory council.

The plan was prompted by what Mr. Willenson calls “a wonderful issue”: the sharp decline in mother-to-child transmissions of HIV/AIDS in the United States. In 2004, fewer than 50 children were born with AIDS, down from 945 in 1992, according to the Centers for Disease Control and Prevention, in Atlanta. The number of HIV transmissions also dropped sharply, according to the Centers’ estimates.

The question facing Camp Heartland is: What should the organization look like when there aren’t enough children with HIV/AIDS to fill the camp?

“It’s similar to what the March of Dimes faced when polio was eradicated,” Mr. Willenson says. “Seven to 10 years from now, we could either go out of business or choose another group of children to serve.”

In the dining hall, he watches as several campers lead this morning’s moment of appreciation. They name things for which they are thankful: “strawberries and waffles,” “my brother,” “Camp Heartland.”

Although he long ago relinquished responsibility for the camp’s day-to-day operations in order to run the organization from its Milwaukee headquarters, Mr. Willenson drops in on camp sessions a half-dozen times each summer. It is what keeps him going, he says, through board meetings, fund raising, and public appearances: “I still need that motivation of getting to know the kids, even if it’s only a few days a year.”

An Early Passion

Mr. Willenson surveys the noisy horde of kids and counselors who, having finished breakfast, are heading to the camp’s amphitheater for the “morning thought” — typically a short skit on a theme such as “respect.”

“One of the most hopeful things,” he says, “is to witness these kids who were literally on death’s door, who are now robust and doing well.” He marvels at how many of the former campers have joined the staff. In the early years, they weren’t expected to live this long.

Before 1997, the first summer that many of the children had access to more-effective AIDS drugs such as protease inhibitors, “there were children we’d have to carry everywhere,” he says. “They were wasting away.” In total, at least 70 former campers have died from AIDS.

Mr. Willenson’s involvement with pediatric AIDS began in 1991, when he was a 20-year-old junior at the University of Wisconsin at Madison, studying film. He read a newspaper article about Nile Sandeen, a boy with AIDS from Mr. Willenson’s hometown of Mequon, Wis. Nile was about to begin kindergarten, and his entry into the school system was causing hysteria.

Appalled by the story, Mr. Willenson befriended Nile and his family and filmed a documentary about them. He kept in touch after graduation, when he spent the summer as a YMCA camp counselor before going to work for his father’s warehouse company in Milwaukee.

That year, Nile yearned to go to summer camp. Nile’s mother turned to Mr. Willenson for advice. He researched Nile’s options, but found just one program for kids with HIV/AIDS, which had a long waiting list.

As Mr. Willenson tells it, the idea to start a camp hit him on New Year’s Day, 1993. “When I told my mom the concept of Camp Heartland, she said, ‘Neil, get a job,’” he says. “My parents had seen me sort of consumed by helping this family.” He ignored her advice and raised $60,000 — mostly through small donations from other young people — in time for a one-week session in August.

There were 73 children that first summer, at a rented facility in Wisconsin. All but a handful kept the disease a secret in their hometowns; camp was a short reprieve from that burden, and a chance to feel normal.

By August 27, when the last session this summer ends, more than 1,000 children and family members will have come from across the country for all-expenses-paid Camp Heartland sessions in Willow River (an 88-acre site purchased in 1997) or at rented facilities in Malibu, Calif., and Carmel, N.Y. Today, roughly half of HIV-infected campers are open about their condition, and more than 100 have given speeches as part of the camp’s year-round AIDS-awareness program. And the camp’s sessions have waiting lists.

Mr. Willenson’s leadership of the organization has turned into a job that pays him $90,000 per year.

As for Nile, Mr. Willenson says, he is now 21, engaged, and studying to be a Lutheran minister.

But the charity leader says among the signs of progress and hope for youngsters with HIV/AIDS, that much work remains.

“Even in 2007,” Mr. Willenson says, “there are many people who genuinely fear these children. That’s still among the greatest burdens they face.”

Although the number of babies born with HIV has decreased, many children still must cope with the effects of the disease on their family, as their parents and other relatives live with HIV. And in other parts of the world, most notably in Africa, HIV infections continue to spread unabated.

A Plan for Growth

At 10:30, Camp Heartland’s advisory council, a new 17-member body composed of former trustees and other supporters, gathers in a conference room.

Roy Connaughton, Camp Heartland’s chief operating officer, reports that the group had a record revenue year: $2.4-million in gifts and money earned from fees and other services, such as renting out the facilities, plus more than $1-million in noncash donations.

More than one-third of the camp’s revenue comes from fund-raising events. Gifts from corporations and foundations account for a total of 32 percent, and individuals donate about 12 percent.

The camp has also struck partnerships with charities that serve other groups of kids, running camp sessions for children in foster care, or those with Tourette’s syndrome or digestive disorders. Fees generated by such partnerships account for about 12 percent of Camp Heartland’s revenue.

The organization provides year-round support for campers as well. Staff members check in with each family at least four times per year and provide them with small sums of money to help them avoid eviction or pay for funeral expenses.

Young people age 16 and up can attend retreats in which they learn skills they will need as adults, like résumé writing.

When Mr. Connaughton finishes his presentation, Mr. Willenson pops out of his chair.

“We are at a crossroads,” he says.

He unveils his plans for expanding the charity, announcing a new umbrella organization, called One Heartland. The new group will incorporate all of the existing activities plus a new venture: an institute through which Camp Heartland can share what it has learned with executives from other charities, like international AIDS organizations and groups that serve children with other diseases.

He says he often receives requests for help from other organizations. For example, he says, the Elizabeth Glaser Pediatric AIDS Foundation recently asked him to assist with a camp in Uganda. (He offered advice long distance, wrote William Salmond, the foundation’s director of its Uganda programs, in an e-mail message to The Chronicle. “I see this collaboration as a great way to take the best from Camp Heartland’s long experience in the U.S. in order to start up a high-quality kids’ camp here,” Mr. Salmond wrote.)

The goal of the new institute, says Mr. Willenson, would be to make the Camp Heartland approach easy to imitate. The camp, he says later, draws inquiries from other charities because of its national scope and the numerous sessions it holds annually.

Camp Heartland, he says, will expand on the number of sessions it offers in partnerships with groups that serve children facing other challenges. But it will continue to run sessions for children affected by HIV/AIDS.

The disease is a leading cause of death of black women, according to the Centers for Disease Control, and an increasing percentage of campers are black children who have family members infected with HIV.

“Our campers face complex hurts,” Mr. Willenson says. “HIV is among them, but it’s not the most overt.” At least 75 percent of campers, including those not affected by HIV, live in poverty, he says. And those with HIV are encountering new issues as medical care extends their lives. Last year, one former camper was killed by gun violence.

Mr. Willenson’s aim for the revamped organization is to reach tens of thousands of children around the world by sharing Camp Heartland’s expertise with charities that work globally.

He flips through PowerPoint slides, rattling off information. “I know I’m going fast,” he says, with pep-rally enthusiasm, “but do you like what you’re hearing?” The group gives a small cheer.

Despite the warm reception, Mr. Willenson acknowledges that he doesn’t yet know what it will take to realize his plans for the charity’s future. His next step will be to conduct a study this fall to determine what the organization would need and whether it has the potential to raise the money to accomplish those goals.

“This is a big vision, but it’s not an impossible vision,” says Anthony Wood, a member of the camp’s advisory council and executive director of the Ittleson Foundation, in New York, which makes grants for AIDS-related work and other causes. “Camp Heartland can be a piece of the solution to the international AIDS crisis. They know they’re not going to solve it, but they have something they can bring to the table.”

Touring the Grounds

At 1 p.m., Mr. Willenson checks in on the campers in the dining hall, who have just finished lunch. He works his way around the room, offering hugs and high-fives, like a politician weaving through a throng of supporters.

Back outside, the donors and board members assemble for tours of the camp led by former campers who are training to become counselors.

Kevin Oatman-Gaitan, 16, directs the group through the arts-and-crafts room, where he tells them about how the staff members produced a skit for campers on opening day. (The theme this session was Harry Potter.)

The performance — an element in every session — is meant to be a lighthearted way of introducing the subject of HIV/AIDS and conveying the notion that camp is a safe place for the children to talk about their experiences with the disease. The camp also offers optional art-therapy sessions and discussion groups.

The visitors seem impressed by the facilities. Donations have gradually transformed the grounds, which now include a ropes course, a 1950s-style ice-cream shop, and a radio station. A new swimming pool was built with donors’ help in the wake of the camp’s inaugural open house last year, which fell on a 101-degree day. When donors asked where the kids could cool down, Mr. Willenson told them that swimming in the three private lakes was off limits because of the risk of bacterial infection.

The emotional center of camp is the honor garden, which sits inside the circular driveway. It contains a large steel statue that resembles an AIDS ribbon, surrounded by vibrant red and orange flowers. Trees are planted in remembrance of former campers, including one boy whose ashes were scattered here in 1999.

Telling Stories

Around 3 p.m., the camp’s driveway fills with Harley-Davidson motorcycles, their engines revving. The group, composed of about 40 employees from UPS, traveled 100 miles from Minneapolis as a surprise for the older campers, who take turns getting slow rides around the circle. The visit is typical of the kind of involvement the camp inspires.

“One of our talents has always been public relations,” Mr. Willenson says, whose group has been featured on The Oprah Winfrey Show and Extreme Makeover: Home Edition. His background in film has been an asset for the camp. “I was always very comfortable on-air,” he says. “It’s part of the job I really enjoy.”

Much of that visibility is due to the children’s compelling stories. The charity offers campers optional training in public speaking, but limits the number of public appearances by each child to three a year — and such appearances, Mr. Willenson says, are generally used for educational purposes, and not for fund raising.

“The ability to speak out can be very liberating and empowering,” he says. “But you don’t want to overdo it. HIV is a facet of who they are, but it’s not their identity.”

During the afternoon program for visiting donors, several campers talk about their lives. Derrell, who keeps his HIV/AIDS status private in his hometown, speaks about being born with the disease. Doctors said he wouldn’t live to age 5. He is 11 now, and says he is doing well in school. But, he says about his illness, “I’m afraid to tell my friends because I don’t want them to overreact.”

Rey Cordova goes last. He is 26 and in charge of training new counselors. He was born with HIV and started coming to Camp Heartland when he was 13, when he was diagnosed with AIDS.

A few years ago, he was hospitalized for a month. “So many people from camp came to visit me. I get a little teary-eyed thinking about it,” he says. “Other than my mom, camp has been the second-biggest influence in my life. It’s helped me grow up and helped me become a man.”

The weeklong session ends tomorrow, and after dinner there is a closing ceremony at the amphitheater. The counselors and other staff members form a lane, waving streamers and cheering as the campers pass through.

The audience settles in for a slate of performances from every cabin, including songs, skits, and even some on-stage head shaving, which delights the crowd.

As the sun sets over Lake Noodle — in honor of Mr. Willenson’s nickname — the entire camp sings a song called “I’m Going to Come Back Here Someday.” Several older girls break into tears.

Mr. Willenson’s day is still far from over. He has promised a golf-cart tour of the camp to two chaperones who will escort 21 kids on an early-morning flight back to Florida. Later, he joins Cabin Two for a campfire and s’mores.

At 10 p.m., one of the volunteer counselors puts him on the phone with her fiancé, a former camper and staff member. The young man asks Mr. Willenson to officiate at their wedding.