"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."