Young Gala Host Leads by Example

Tri Valley Herald, March 2007

By Mary Ann Cruz

Well, hello there! It’s good to see you,” said Francesca Tenconi, a broad smile on her face as she held out her hand. It was an hour before the formal program kicked off at the Children’s Skin Disease Foundation’s lavish glam-slam gala, “One Enchanted Evening,” and Francesca, founder and president, was working the cocktail reception, letting key donors and volunteers know how much their support was appreciated. “Thanks for joining us tonight. Please enjoy!” As she went about her schmoozing, nearly 200 revelers from all over were converging on the Blackhawk Country Club, primed to eat, drink and raise over $100,000 for a worthy cause. Awaiting them were Francesca and her top-notch team director Elberta Bedoar and her assistant, Brian Young, event coordinator Ria Sim and graphic designer Rebecca Talley that had lovingly created all the trappings of a fabulous, marvelous, sensational and emotionally-charged happening.

Camp Wonder: For kids, a week away from the stares

By Jason Millman, USA TODAY

When Francesca Tenconi turned 16, she didn't ask for a Sweet 16 party and she didn't ask for any presents, although no one deserved a good time as much as she did.

Tenconi, 24, was diagnosed at 11 with pemphigus foliaceous, a skin disease that threatened her life and eventually claimed most of her skin. During the four years it took to recover, Tenconi learned the loneliness of having a severe skin disease.

"It's hard to deal with because it's so visual," she says. "Kids at a toy store would look at me and question. It's something that's very, very difficult to deal with."

A Place for Kids to be Kids

Jefferson Award Winner: Francesca Tenconi

Kate Kelly, Reporting

(CBS 5) At age 11, Francesca Tenconi was already a nationally ranked swimmer, dreaming of the Olympics. But that's the year she got sick. Blisters erupted all over her body. "There's antibodies in my body that recognize my skin as a foreign substance," Francesca explains. "So that is how the disease works and it creates blisters."

By the time doctors diagnosed pemphigus foliaceus, Francesca had lost 85% of her skin and was not expected to survive. But chemotherapy, steroids, and immuno-suppresant drugs saved her life. The ordeal gave her a new mission. "There wasn't a lot of knowledge about it, there wasn't any support system, there wasn't any support group," she says. So Francesca created that support network in the East Bay at Camp Wonder, a free, one-week summer camp for dozens of kids from around the country with skin diseases. "Nobody stares at you, nobody makes fun of you," says camper Autumn Sproul. "Everybody experiences the same thing." But this shared experience that can be painful. Forty doctors and nurses from across California volunteer their time to oversee medications and make daily bandage changes.

Awards and Grants

A staunch advocate for sick children, Francesca has achieved the following in her quest to make the public aware of the Children’s Skin Disease Foundation and its mission:

Francesca was chosen to tell her story on the nationally televised Montel Williams Show which aired repeatedly during 2007.

Each year, nine remarkable young adults, who have taken action to measurably strengthen their communities, are rewarded by the Do Something Brick Award. Francesca received the award at their Gala in New York City on April 2006 with a grant going to the Children’s Skin Disease Foundation (CSDF).

Camp Wonder:  Where Nobody Looks at You Twice

Tri Valley Herald

By Chris Vongsarath, Staff Writer

07/04/2007

LIVERMORE - The only wondering going on at Camp Wonder is, "When do I get to come back?" Camp Wonder, an annual weeklong camp put on by the Children's Skin Disease Foundation (CSDF), is a place where kids and teenagers with various skin diseases can participate in normal camp activities without the stares and second looks that accompany their daily lives. Every year, dozens of kids from all across the country flock to Camp Wonder — located at Camp Arroyo near Livermore — seeking the one week in the year where they can enjoy swimming, horseback riding, arts and crafts, performances and trips to the reservoir with friends.

Austin Milam, 10, makes the annual trip from Colorado Springs because he enjoys Camp Wonder's accepting atmosphere, something he can't get at other, closer camps. Even though Austin suffers from a skin disease that severely dries his skin, he finds time to participate in arts and crafts, his favorite camp activity. Ten-year-old Nicky Zahorcak of Lancaster suffers from a skin disease called epidermolysis bullosa (EB), a rare condition that causes blistering and a breakdown of layers of the skin. Nicky has to remain heavily bandaged, otherwise the slightest touch or friction on his skin can cause it to blister uncontrollably.

Camp Wonder

Welcome to Camp Wonder! The summer camp that is for children with serious and fatal skin disease aged 7-16 years old. Camp offers a wide variety of activities. They include swimming, boating, arts and crafts, games, archery, fishing, ropes course, nature walks, sports & recreation, silly olympics, theater and more.  Camp is a great place to bond with other children your age and have some wonderful experiences and fun.

THERE IS NO CHARGE FOR CHILDREN ATTENDING CAMP. Because many families of children with severe skin disease are burdened with large medical expenses, children attend CSDF's camps without charge. To raise the funds for camp, CSDF depends on the generosity of supporters. See 15 Ways You Can Help.

Camp Gives Ailing Kids Week Of Fun

One child in 20,000 is born with the skin disease epidermolysis bullosa. Lana Coil has three of them.

The disease, known as EB, leaves the skin extremely fragile and impairs its ability to bond to the body. Even the slightest amount of friction can cause painful sores and blisters, or make the skin literally slough off. Those who have EB lead incredibly sheltered lives - even something as simple as a bath may require a dose of morphine - and don't usually live much beyond their 20s. Coil recalls attending the funeral of an EB-afflicted friend who, she says, "lived a long, long life." He was 38.

For a kid with EB, a "normal" life is next to impossible. That's why two of Coil's three children - 11-year-old Alex and 10-year-old Brandi - are looking forward to next week's Camp Wonder in Livermore. For one week, they'll be able to run around with other kids like them, laughing and playing and perhaps even going for a swim.

Camp Shifts Focus

Lizie Fernandez, 10, left, of Texas practices for the talent show with her friends Natasha Starkey, 9, right, of Ohio and Brandi Coil, 10, of Grass Valley at Camp Wonder in Livermore on Tuesday. The three of them, who live with epidermolysis bullosa, named their band the Super Duper Models and sang the song.

For these children, Camp Wonder means a week with others who live like them: Camp shifts focus from skin ailments.

Published in the Contra Costa Times - Sunday, June 26, 2005 on the front page and full pages 10 & 11

By Sandy Kleffman of the Contra Costa Times

LIVERMORE - Natasha Starkey and Lizie Fernandez, best buddies at camp, prepare to launch into a song they composed. "One, two, three, let's hit it," they chant, breaking into "Olivia, the Black-Nosed Bunny." It's a scene that could be repeated at camps throughout the United States: two girls, 9 and 10, sharing the joyous creation of a close friendship. Except that behind a curtain next to the girls, a young boy with a serious skin disease screams in agony as adults change his bandages.