BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
Our friend John Hudson Dilgen is 14, and he's battled valiantly his whole life with EB, a genetic condition that causes his skin and even his mouth and throat to constantly blister and scar, which of course is terribly painful and debilitating. John is an amazing kid, and most of the time maintains a positive attitude to what most of us would consider to be unbearable.
There's some hopeful treatments and gene therapy advances in the pipeline, but we need to keep raising money to advance the research. For John, this race for a cure is urgent and absolutely personal.
Thanks for helping us help John, and the many other children who must bear this condition minute-by-minute, day by day.
FROM THE 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.