When celebrities like Jennifer Lopez and Jessica Simpson need to look great, they stop by Ken Paves's Beverly Hills salon. This celebrity hairstylist may be best known for his fabulous cuts, but he's also making a name for himself as a big giver.
Five years ago, Ken met a young girl named Rachel while shopping at the mall. "I saw this beautiful little girl with this amazing red hair," he says. "She was in a wheelchair, covered in bandages from her neck down."
Ken says he was instantly drawn to Rachel. After striking up a conversation, he learned that she suffers from a rare genetic skin disorder called epidermolysis bullosa (EB). This painful, incurable disease causes skin to blister and fall off in sheets. "Aside from her beautiful red hair, I saw her little hands," Ken says. "From all of the scarring and blistering, they had webbed over."
Children like Rachel are often called "butterfly children" because their skin is as fragile as a butterfly wing. They must be wrapped in gauze at all times to prevent injury or a deadly infection. "I know that Rachel came into my life as a reminder for me to keep my priorities straight," Ken says.
Since meeting Rachel, Ken's been on a special mission to raise awareness about EB and help those suffering from the disease. Inspired by
Oprah's Big Give, Ken called on his celebrity clients and famous friends to help him plan a star-studded fundraiser.
Desperate Housewives star Eva Longoria Parker got on board and offered to host the party at her new Hollywood restaurant, Beso.
Take a sneak peek inside Eva's restaurant! Though Beso wasn't open to the public yet, Eva opened the doors for Ken, her friend and hairstylist. To prepare for the big night, Todd English, co-owner and chef, fired up the oven to make flatbread pizzas and an assortment of appetizers.
On the big night, all of Ken's famous friends came out to raise funds for the EB Medical Research Foundation, a nonprofit organization working to find a cure. Nate Berkus, host of Oprah's Big Give, reported from the red carpet.
"Courteney Cox Arquette, Orlando Bloom, Jessica Simpson, Eva Longoria Parker—everybody is here tonight to celebrate," he says. "This party is insane."
Inside the restaurant, celebrities like Kate Beckinsale, Holly Robinson Peete and Jason Bateman gathered for the good cause. Eva says she was amazed by the turnout. "All of these celebrities are friends of friends," she says. "It's like six degrees of separation. When you pull it all together, you create miracles."
Jessica Simpson says there's a simple explanation for why people support Ken, the man behind the miracle. "The reason why he has great friends around him is because he is an amazing person," she says.
Ken isn't the only celebrity passionate about EB awareness. Together with jewelry designer Satya, David Arquette and Courteney Cox Arquette have designed a necklace to benefit children suffering from EB.
"It's a little butterfly because they're called butterfly children," Courteney says. The pendant is available in sterling silver or 18kt gold.
The Satya Foundation donates 100 percent of the proceeds from the sale of this necklace to the EB Medical Research Foundation. Necklaces are available online at SatyaJewelry.com.
Ken says we can all learn something from people with EB and his friend Rachel. "This little girl, whose feet are covered in blisters, walked through this party...emulating a beauty that I could never apply to anybody," he says. "Strength and courage and honor to self—that really, to me, is true beauty."
Ken hoped to raise $1 million with his Hollywood party, but instead, he doubled that amount! "We raised over $2 million," he says. "We're going to keep on giving, so I encourage everybody to keep helping us to give."
Andrea Pett-Joseph, the executive vice president of the EB Medical Research Foundation, is also a mother who knows firsthand how EB can affect a family. Her 4-year-old son, Brandon, is living with the skin disease.
All the money raised will help Andrea's foundation find a cure. "It's an amazing gift for the families who struggle with EB," she says. "It really gives us hope that we can get closer to a cure and not be discouraged by what we have to endure every day."
