Epidermolysis Bullosa, EB, is a rare connective tissue disorder that affects 1 in 50,000 live births. There are children and adults who face the challenges of EB every day. The slightest amount of friction, even the softest of touches can cause severe and excruciatingly painful blisters. There is no cure. Many children do not make it to their first birthday and those who survive, spend their days bandaged from head to toe, full of constant pain and suffering the many complications that come with EB.
I Refuse EB was launched in 2012 by EB advocate Christie Zink to help raise awareness for EB, promote advocacy and support the research efforts taking place at the University of Minnesota by Dr. Jakub Tolar through Pioneering Unique Cures for Kids (PUCK).
Today, there is NO treatment or cure. But there is very real hope in promising research and clinical trials being conducted at esteemed institutions such as the University of Minnesota team led by Dr. Jakub Tolar. His tremendous progress in pioneering safer BMTs has been life altering for children like Charlie, and has potentially broader implications for others suffering genetic disorders or diseases like Leukemia
This research is vital and it has been a privilege to have the opportunity to support Dr. Tolar and his team. To date the I Refuse EB campaign has successfully raised and donated $30,000 to PUCK in support of a cure to end EB.