Meredith and Jennifer Ruhl via Crowdrise
August 18, 2015
We are thrilled to be a part of Team EBRP! We are walking and running in honor of Raul, who is Meredith's nephew and Jennifer's grandson, and all others living with EB. Raul is a curious, funny, talkative, firetruck-loving 5-year-old boy from Romania who has joined our family and won our hearts. Raul lives with Severe Recessive Dystrophic EB and is awaiting a bone marrow transplant in MN. Please visit his blog, romanianbutterfly.com, to learn more about Raul, his journey to the United States, and his courage in living with EB. And, please consider contributing to our fundraising efforts in support of the EB Research Partnership, an organization dedicated to treating and ultimately curing EB!
In October, we will both be participating in a 5k and Meredith will also be running in a 10 mile race (part of the Twin Cities Marathon weekend) to raise money for this cause that means a great deal to our family.
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.