Hi, name is Ethan, and I am eight years old, and I run for EB!
A few years ago, my mom met a little boy named Tripp, he had something called Epidermolysis Bullosa or EB. I decided to learn more about Epidermolysis Bullosa and that it is a very painful skin condition that causes kids to suffer and sometimes die. It made me very sad to think that kids with EB do not always get to do things that kids should be able to do and that they often times were in pain. I wanted to help. So, last year I asked my mom if I could run with her and raise money. She said yes and I raised almost $14,000 for Dr. Tolar at the University of Minnesota. It made me feel really good to know that what I was doing might help save the lives of other kids.
I want to run with my mom again this year for #teamEBRP to raise more for research so that my friends with EB and other people who have EB will have hope for a better life. I hope that you will support me and help me make a difference.
EB Research Partnership wrote -
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.