Click here to see the amazing 1000 Laces story and see adorable pictures of Ellie
Ellie Tavani is only five years old, yet she has already endured a lifetime of pain. She was born with Epidermolysis Bullosa (EB). Her skin is so delicate that even the softest touch causes it to blister.
EB is a devastating, painful, disfiguring and currently incurable blistering disease that affects children from birth (see images). Ellie’s skin is bandaged daily in order to prevent new blistering.
We (Ellie’s father Andrew, Aunt Stephanie and Uncle Michael) are running the New York City Marathon on November 6, 2011. Our goal is to spread awareness by selling 1,000 green shoelaces. All of the money raised will go directly toward funding research through the Jackson Gabriel Silver Foundation so that Ellie can lead a better life and we can find a cure for EB!
There is hope. Tremendously encouraging and viable research to treat and cure this disease is ongoing. Given that EB affects fewer than 20,000 people in the United States, advancing this research significantly relies on the generosity of individuals and corporations. Please support our effort and help us spread the word by buying a pair of green laces. A life without bandages and pain is all we want for those affected by EB.
