Dry skin, acne, wrinkles. Troublesome, sure, but life changing? Hardly. Most of the maladies that most cosmetic chemists and the companies that they work for solve each day pale in comparison to issues that face children with skin diseases, such as epidermolysis bullosa, pemphigus ichthyosis, alopecia, vitiligo, eczema, psoriasis and skin cancer. These diseases, often incurable, are also often clearly visible, which can make kids self-conscious and lead to isolation and feelings of hopelessness.
 
Francesca Tenconi knows those feelings all too well, as she was diagnosed with pemphigus foliaceous, a serious, potentially fatal skin disease when she was 11. While receiving treatment at several university hospitals, Tenconi met other children with skin diseases and realized that skin diseases don’t get the same level of support as other pediatric diseases.
 
To help level the playing field, she created The Children’s Skin Disease Foundation in 2000, on her 16^th birthday. CSDF raises money to improve the lives of and address the unique issues that face children with skin disease. The Foundation’s monetary goals, however, do nothing to address the psychological suffering of young people. So Tenconi went even further the following year.
 
“I wanted to find a way for kids to come together in a support group and that’s how the idea for camp came about,” she explained.
 
CSDF established Camp Wonder, a medically staffed summer camp for children with skin disease. For one week each year, kids are able to avoid the staring, stigma and isolation often associated with these maladies. For one week, campers are able to feel “normal” and just be kids, according to CSDF. In its first year, Camp Wonder, located 40 miles east of San Francisco, welcomed 19 kids to its week long, overnight session. Last year, more than 80 children enjoyed a week at Camp Wonder, a week that included a range of activities such as arts and crafts, meadow games and plenty of time in the pool.
 
“We try to give them a normal experience,” explained Tenconi. “A lot of the kids haven’t been in a pool because they aren’t comfortable in a bathing suit.”
 
The Camp Wonder agenda also includes zip-lining and rock climbing, activities that challenge the campers.
 
“Some of the kids don’t have fully-functioning hands, so we show them what they’re capable of,” explained Tenconi. “Once they realize that they can do it, it’s a very empowering experience.”
 
Campers are evenly split between boys and girls, and range in age from 6 to 16, with the majority between 10-13, a critical age for kids with skin diseases.
 
“That’s the age when we can make the most difference,” she explained.
 
That’s because, by that time, kids start to realize they look different or something traumatic may have happened at school that made them realize it. To help kids experience some of the good things in high school, Camp Wonder even holds a prom for campers. To keep things running smoothly, Camp Wonder is supported by a large medical staff that’s made up of 40 volunteer doctors and nurses.
 
Aside from the yearly camp, CSDF also organizes social and educational events for children with skin disease and their families. CSDF assists parents of children with skin disease by providing support directly and through other parents whose child has the same skin disease. The Foundation also offers family assistance in the form of computer donation, wish fulfillment and educational scholarships.
 

Cetaphil Fills a Need

All of these activities take a lot of time…and a lot of money. Tenconi fondly recalled a call in to Cetaphil asking for product donations.
 
“It’s a great formula and we use a lot of it at camp. They were happy to send us some, but they told us they can do even more.”
 
Cetaphil, a Galderma Labs’ brand, provides a yearly grant to support the camp and provides other forms of assistance too, such as website design. And each year, employee volunteers attend Camp Wonder to help the campers design a label that appears on Cetaphil products the following year. 
 
“They support us on so many different levels,” explained Tenconi, who noted that Cetaphil’s support enabled her to appear at the recent American Academy of Dermatology annual meeting and give a 20-minute talk about the camp and the foundation.
 
“Our goal is to improve public awareness about skin disease and we want to spread awareness about the camp, too,” she explained. “Dermatologists understand skin disease on an illness level, but there are a lot of challenges that go beyond the illness and affect the quality of life.”
 
During the next five years, Tenconi wants to continue to expand awareness about the foundation and Camp Wonder. By speaking at events such as AAD, it builds a bridge to doctors and their patients. Tenconi is also conducting an educational outreach program to teach schoolchildren about the importance of sun protection. The program’s been tested in Los Angeles, but Tenconi wants to go nationwide.
 
“The plan is to use nurses and doctors who can go into the local community and provide teaching materials and sunscreen and show kids how to take care of their skin.”
 
But expanding services to families afflicted by skin disease, expanding Camp Wonder and building a community outreach program, takes funding.
 
“We are very small, so no donation is too small,” asserted Tenconi. “We want to reach patients who may never have heard of us.”