BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT: 2016 United Airlines NYC Half
EVENT DATE: Mar 20, 2016
THE STORY:
"Although she be but little, she is fierce." -- SHE is our 4 year old daughter Charley Kauf, and our inspiration to fight to the finish in finding a cure for EB.
Charley was born with Epidermylosis Bullosa (EB), a devastating and life-threatening skin condition that affects children from birth. Children born with EB lack a critical protein that binds their layers of skin together. Without this protein, even the slightest touch or friction can cause blisters and wounds all over the body—inside and out.
On March 20th, we will be running the United Airlines New York City Half Marathon to support the EB Research Partnership (EBRP), a nonprofit organization that is close to our hearts. Together we can support their mission on finding a cure for EB so one day my daughter, and all those afflicted with EB, will have a chance at living pain-free lives.
EB RESEARCH PARTNERSHIP
We are working to treat and cure EB as quickly and efficiently as possible. We fulfill our mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities.
We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a devastating and life-threatening skin condition that affects children from birth.
Leading researchers say treatments and a cure for EB are within reach—for Shane, Ryan, Jackson, Michael, Jennifer and every other person suffering from this horrific condition. Though we have made significant progress, we need much greater resources in our pursuit of a cure.
Partner with us in our mission to further life-saving research.
http://ebresearch.org/
https://www.youtube.com/watch?v=qz0QeSCWif4
http://www.thedoctorstv.com/videolib/init/1009
