I am riding in the Courage Classic to support patients with epidermolsys bullosa, also called EB.
EB is a group of genetic disorders with the common feature of fragile skin. Children born with EB suffer from a lifetime of blisters and open sores on their skin. Those with the worst forms of EB go on to develop other skin and health problems, including chronic pain and limited mobility. I have cared for patients with EB for over 15 years, and these special individuals have taught me so much about living courageously. This winter, I had the privilege of spending a day with 8 young men and women with recesssive dystrophic EB at Camp Spirit, a weeklong winter camp that was created specifically for patients with this severe form of EB. With the help of their instructors and special ski sleds, they sailed down the slopes and revelled in feeling free from their disabilities.
The EB clinic at Children's Hospital Colorado is the only EB center in the Rocky Mountain US, providing care for over 100 patients with this rare disorder. Our programmatic goals are to help patients with EB live the fullest lives possible, by optimizing their health and quality of life, and to find better treatments through clinical and translational research.
The daily care of EB is time consuming and expensive for families. Your dontation will go to the EB Family Assistance Fund, which helps cover the unexpected life and medical costs of EB that are not covered by insurance, and funds Camp Spirit, which is free to children with recessive dystrophic EB from all over the country.
My patients with EB will be my inspiration as I ride in the Courage Classic. This event is not only a personal challenge, but also a wonderful opportunity to support positive outcomes and healthier futures for children, including those with EB.