In a sign of the times, Minnesota camp for kids with HIV is closing

CATHY WURZER: And if you had any question whatsoever before today, summer is really, truly over, and it's the end of an era for children affected by HIV and AIDS in the Midwest. After 30 summers of gathering and celebrating children with an HIV positive status, Camp Heartland in Willow River, Minnesota, is up for sale. The camp's founder, Neil Willenson, is on the line right now to talk about why he put together the organization, how far it's come, and what is next. Neil, thanks for taking the time. How have you been?

NEIL WILLENSON: I'm doing really well, Cathy. Thank you so much for your interest today.

CATHY WURZER: Absolutely. Gosh, I remember talking to you-- this probably shows you how long I've been around-- way back when you first set out to launch Camp Heartland, and I remember you and I talked about your focus to help kids affected by HIV. And it was kind of a new concept at the time. Tell folks why you wanted to do this.

NEIL WILLENSON: I was pursuing a career in acting. That's what I wanted to do. I was 20 years old, and my life changed profoundly. I was at the University of Madison-- University of Wisconsin, Madison-- and I read a newspaper article about two little boys that lived a mile from my home outside Milwaukee. And it just talked about this little guy, Niall, that was born with HIV.

This is in 1991. So this is the era-- we can't always reflect on this now. You don't really understand the discrimination now. There's a little bit, but back then it was fierce. You had Ryan White driven out of school, and the Ray brothers had their house firebombed not because they did anything wrong. They were living with HIV.

And so the long story short is, I read this article. It talked about two little kids in my neighborhood that were affected by AIDS, one living with it, one had a sibling and a mother with it. And I knew from my days as a camp counselor and as a camper that a camp for kids who are isolated could make a profound impact, and that was the genesis for Camp Heartland more than 30 years ago.

CATHY WURZER: You just think back on all the stereotypes and all the misinformation at the time and think how things have changed. When you founded the camp, what did you notice about the kids that would come every summer? Did your dreams fulfill-- were they fulfilled by seeing those kids?

NEIL WILLENSON: Well, it's incredible. To be honest, I still wanted to go to my Hollywood career. I've put that behind me. But Camp Heartland was called Camp Heartland Project, Cathy. It was going to be a one week, one time camp. But by the second or third night of camp, we gathered a group of children, and we had a little candlelight ceremony. They just passed the candle around the campfire, as you do, and we just asked them to share what was in their heart.

And a little guy, Ryan, said, this is the best week of my life, which was so moving and also sad because that particular week, Ryan came to us after surviving something called pneumocystis pneumonia, which had been a killer for many children with HIV. So he was in our infirmary that we called Club Meds most of the week.

He missed most of the activities, yet this was his best week. And it wasn't because of the activities. It was because it was an environment of unconditional love and acceptance. So the moment I heard that-- and other college aged volunteers-- we rolled up our sleeves and said, we have to make this a bigger national charity. And we did last for 30 years. It was a tremendous, tremendous run.

CATHY WURZER: Good. I'm so glad to hear that. So childhood HIV is a little less common nowadays, and I know that the camp opened its doors to children who are homeless and maybe those who are also affected by other issues, like type 2 diabetes. It was an interesting way to expand the focus of the camp. Do you remember why that happened? What was the reasoning behind that?

NEIL WILLENSON: Absolutely. So the year we were founded, 1,630 children were born with HIV. And Cathy, it's just a medical miracle 30 years later. There might be a handful or less in the US born. They can prevent mother to child transmission. So any founder dreams of the day that their charity can go out of business.

So in many ways, it's sweet. We're announcing that our property is up for sale. But about 10, 15 years ago, we realized that we had core competencies in helping children who were isolated, helping children that experienced discrimination and hardship. So the program, really, after I left-- I retired from this camp in 2010.

But under the leadership of Patrick Kindler and many others, they welcomed LGBTQ youth through a program called Camp True Colors. And you mentioned unhoused youth and grieving kids and those with type 2 diabetes, and those programs have been very, very successful. And there is a sense of sadness for those kids that were still attending camp through this summer.

CATHY WURZER: I know a lot of former campers have been reaching out to you and to others after it's gotten out that the camp is closing. What are you hearing?

NEIL WILLENSON: It's sad. I think if you think about even you and me, you think about your high school, your college, your summer camp, something even if you haven't attended in decades, there's some comfort knowing that something that was important to you is still in operation. So I think there's a real sense of nostalgia.

I posted on Facebook, I believe, it was Monday. I think the last count, there's about 150 messages in some cases from former campers who are now in their 30s or 40s, and they're reflecting to say that this program, that this community, this place of unconditional love and acceptance, was the ultimate place that helped guide them as adults. And so in one way, I'm overjoyed that we can eliminate the Camp Heartland program because mother to child transmission of HIV has been virtually eliminated in this country.

But there is sadness, and I know that for me, I will feel so much better when another operator, when another great nonprofit to be determined, purchases the camp and continues this caring tradition. I would love to see this gorgeous one Heartland Center. It's 80 beautiful acres, two lakes, 15 cabins. It's a beautiful facility. If it's used for another group of kids facing hardships, I will be so thrilled, and I think we'll all feel a heck of a lot better.

CATHY WURZER: Say, I know you put aside your personal dreams to make this happen. And I'm wondering, what have you learned about yourself over these many years?

NEIL WILLENSON: I'm in awe of the kids. When I made my Facebook post on Monday, I ended by saying to the campers, the former campers, I am just in such awe of their resilience. These are young people. We didn't even know what adverse childhood experiences were at the time, but these were young people that not only were living with HIV or had a loved one with it, many of them were grieving. Many of them had lost a parent or two parents to the disease. Many were living in poverty. Some of them had parents who were incarcerated.

Yet through it all and through the power of community and the power of hope, they got through it. Most of the young people-- we served 6,000 children affected by AIDS. The losses were profound, and I don't want to minimize that, Cathy. We lost 150 kids that I know of.

But thousands and thousands and thousands through medicine, through the support of their community and the camp community, and through their own inner strength did endure, and they're living good lives. And so that's what gets me through the sad times over the years. But I just learned a lot about resilience and the power of hope.

CATHY WURZER: And by the way, what do you want to do? What are you doing right now? What are your future dreams for yourself?

NEIL WILLENSON: I happen to be the CEO of Big Brothers, Big Sisters of Metro Milwaukee, and so I've just carried on the tradition. I believe so much in mentorship. You have an amazing chapter led by my friend Pat right there in the Twin Cities. And so it's an honor to do this. But the honor of my life was working for nearly 20 years with children with HIV/AIDS. And literally every week, I hear from a former camper, and I'm just full of such joy to see that these young people who we thought would die-- that was the prognosis.

We were losing sometimes five, six kids a year in the early years of the camp-- to see that these young people are married, and they're productive. One of them, my friend, Ray, is a leading social worker. He has an MSW, an LSW. Some are nurses. Some are doctors. Some are business leaders. It's incredible. So I just live vicariously through the accomplishments of these kids. I'm just so full of joy for what's been accomplished.

CATHY WURZER: Well, we'll see what happens to the camp, as you say. We'll see. Maybe another great organization comes around and buys the property near Willow River. It's been an honor and really a privilege catching up with you after all these years, Neil. Thank you for what you've done, and I wish you all the best.

NEIL WILLENSON: Thank you for your warm wishes. We're so grateful. And we were welcomed with open arms in Willow River, Minnesota, at a time where there was so much discrimination, so I always have a fond spot in my heart for everyone in Minnesota that was so caring for thousands of people.

CATHY WURZER: Best of luck. Thank you, Neil.

NEIL WILLENSON: Thank you, Cathy.

CATHY WURZER: Neil Willenson is the founder of Camp Heartland based in Willow River, Minnesota.