BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Mar 20, 2016
Six years ago Craig and I lost our second son, Ryan to Epidermolysis Bullosa (better known as EB). Ryan only had 80 days on this earth to warm hearts and change lives before he earned his butterfly wings. It's our mission to keep him memory alive and help fundraiser for a cure which is in sight.
This year Craig and Mary Ellen will both be participating in the NYC Half Marathon with a group of parents also fighting the fight for our children who cannot. Please consider supporting us with a donation of any size!
Craig and M.E.
ABOUT 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 group of devastating and life-threatening genetic skin disorders that affect 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.