A Founder Who Lived It First
In this special philanthropy-focused episode, PA Buchi Neita is joined by co-host PA Jenny Laminack, Elevate's philanthropy chair, to hear the Children’s Skin Disease Foundation’s story directly from its founder, Francesca Tenconi. As Neita notes, her bio reads like someone born to do this work — a Duke degree focused on the biopsychosocial impacts of chronic childhood illness, clinical trial experience in UCLA’s division of dermatology, and an MBA from Berkeley Haas in healthcare and nonprofit management.
But Tenconi is clear that the passion came from experience, not a resume. She was diagnosed at age 11 with pemphigus, a very rare skin disease, and describes how it changed her life. She had been a healthy kid and a swimmer with few health issues. She was on prednisone for 24 years before rituximab helped clear her skin, and it was only after coming off prednisone that she fully understood the impact. As she put it, she 'didn't know people lived without prednisone and the side effects of prednisone.'
Her central insight for clinicians: kids with skin disease literally wear their disease. Any pediatric illness is devastating, she says, but many kids can hide their condition and feel normal — children with visible skin disease don't have that option.
What Providers Often Miss — and What's Changing
When Neita asks what clinicians tend to overlook in a child suffering from severe skin disease, Tenconi points to the mental and emotional load: self-confidence, feeling different, and a constant discomfort that's hard to explain and touches every aspect of life. She emphasizes that when she was diagnosed, there was little attention to the mental impact — care was more clinical — and she applauds how much the field has changed, noting the very fact that the question is being asked wouldn't have happened 10 or 15 years ago.
Neita connects this to a prior episode on engaging patients about how they feel about their skin, including using tools like the Dermatology Quality of Life Index. Both hosts and Tenconi raise a practical nuance: for many kids, chronic itch, discomfort, and medication side effects become their baseline 'normal.' Ask a child if they're okay, and they'll say 'I'm fine' — not because they're hiding it, but because that discomfort is all they've known. The Foundation's approach, Tenconi says, is to accept that baseline and then 'layer on fun,' life, and experiences on top of it.
From a 16th Birthday to a 180-Camper Program
The Foundation grew out of Tenconi's own lack of support as a child. The only support groups available were for adults — she and her mom once left an adult group halfway through because the content wasn't appropriate or applicable to a child. For her 16th birthday, prompted by a high school community service culture, she wrote a letter (typed, she jokes, given the era) asking family and friends to donate seed money to start a nonprofit. That seed funding launched the organization.
Because she missed summer camp so deeply after getting sick, camp became the mission: a fun, supportive community for a week. The first year, after about a year and a half of fundraising, camp hosted roughly 51 people; today it serves about 180. Camp Wonder runs at a campsite built for kids with special needs just outside Atlanta, Georgia, at the end of June each year. The facility includes a 'Med Lodge' — essentially a mini hospital for the weekend — and fully adaptive activities, from a pool you can wheel into to accessible showers.
Eligibility is broad: children ages six to 16, from anywhere in North America, with any skin disease. Tenconi explains the Foundation once focused on the more severe end of the spectrum but learned that conditions like atopic dermatitis, while different from something like epidermolysis bullosa (EB), can be very similar in terms of discomfort and impact. The Foundation covers 100% of costs, including airfare — last year 56 kids flew in — specifically so families who can't afford it are never excluded. Delta Airlines is a partner, and kids get cockpit visits and wings.
Why Volunteering Makes Better Clinicians
Camp is staffed entirely by volunteers, including doctors, nurses, and PAs. Co-host Jenny Lamenak, who volunteered on the medical staff, describes it as a well-oiled machine and a genuine summer camp experience — swimming, archery, arts and crafts, and meals — where kids can just be kids. The medical team handles EB dressing changes and feeding tubes so children don't have to worry about them. A highlight for Lamenak was working alongside Dr. Emily Gorell, who runs an EB clinic, learning dressing changes and seeing the disease state and the kids' resilience firsthand.
The medical value runs both ways. Kids get to see clinicians outside the clinical setting — in the pool, doing skits on stage — with one child remarking they didn't know doctors could be fun. And clinicians see the full daily reality of the disease. Tenconi shares that one nurse tells residents and students each year: this is your week to understand that when you prescribe something or tell a family to do something, you have to do it too. The lesson is to treat patients in ways that actually fit into their lives.
The payoff shows in the campers. Tenconi can spot the new kids the first night by their hunched shoulders and hoods; by the end, she sees empowerment, security, and confidence. In 26 years, no child has ever been sent home sick. She's watched shy nine-year-olds return as counselors and even as physicians, and she credits hundreds of volunteers, donors, and trusting parents for making it possible.
How APPs Can Help
Tenconi's asks for the SkinSync audience are concrete. Refer eligible patients — ages six to 16, anywhere in North America, with any skin disease — through the Foundation's website. Raise awareness in your community, and remember that some children never see a dermatologist because none exists where they live; their pediatrician may be the only referral path to camp.
Beyond referrals, she invites clinicians and even high schoolers to volunteer for the week (no phones — it's technology-free), and welcomes donations, noting the Foundation is small and not backed by a large institution. As Neita tells her, whether she likes it or not, the hosts are now part of the Camp Wonder community — and Elevate Derm Alliance is glad to support the work.