BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Nov 06, 2016
Dear Family and Friends,
On Sunday, November 6, 2016, I will be running the NYC marathon in honor of my son Robert John who suffers from Epidermolysis Bullosa. Daily he goes through more pain than most people will feel in a lifetime. Please join me and my amazing team in finding a cure for Robbie and all of those living with this devastating disease. Today we are closer to a cure than ever before. Your donation will help with research that can and will improve the quality of life of all of those living with EB. Thank you for your support. God Bless!!!
EB Research Partnership wrote -
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.