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. In the video, Ellie talks about her daddy's plan to run the New York City Marathon, 1000 Laces and the need to find a cure for EB.
Ellie's father Andrew, her Aunt Stephanie and her Uncle Michael ran the New York City Marathon on November 6, 2011. Their goal was to spread EB 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!
Thank you to all those who helped to make our 5th annual event so successful. We had a great time at our 5th Annual Butterfly Wishes for Ellie fundraising event, where we raised over 35,000 dollars and hope for the many families that cope with Epidermolysis Bullosa (EB) every day.
Butterfly Wishes for Ellie thanks our event sponsor Molnlycke Health Care US, LLC
Molnlycke Health Care US, LLC
In addition, the Tavani Family wants to take this opportunity to thank all Butterfly Wishes for Ellie supporters and all those who support awareness and a cure for EB (Epidermolysis Bullosa).
Each year, a week in October is devoted to Epidermolysis Bullosa (EB) Awareness.
