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.
We are dedicated to raising awareness, being a voice for those affected, promoting advocacy and supporting the research efforts taking place at the University of Minnesota by Dr. Jakub Tolar through Pioneering Unique Cures for Kids. This research is so incredibly critical and it has been a privilege to have the opportunity to support Dr. Tolar and his team. Dr. Tolar is continuously striving to make life better for these kids despite the challenges and setbacks. Because of this dedication, tremendous strides are being made and each new day brings them closer to finding a cure.
I Refuse takes on a different meaning for each individual. As an advocate,it may be that you refuse to stand back and do nothing. As someone directly affected it may be, refusing to be defined by EB. Parents and caregivers also have a very individual perspective.. There is no right or wrong answer, for it comes from within you. It is up to you to determine what I Refuse means to you…so, what is your I Refuse statement?