I am riding in this year's "virtual" Courage Classic to support my patients with epidermolsys bullosa (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 develop other skin and health problems, including chronic pain and limited mobility. 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 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. We are one of only a few centers in the US offering clinical trials for treatment of EB.
The daily care of EB is time consuming and expensive for families. Many of our patients are from outside of Colorado, and even in the face of a pandemic, they continue to travel to Children's Colorado to receive world class care for EB. Your donation to my ride will go to the EB Family Assistance Fund, which supports our EB patients and families. The fund helps cover the unexpected life and medical costs of EB that are not covered by insurance, including travelling for medical care, and also supports vital aspects of our EB program such as our social worker and child life specialist.
Throughout my career, my patients with EB and their families have taught me so much about COURAGE and LIVING COURAGEOUSLY. Now, more than ever, we need your help to cotinue our mission of supporting positive outcomes and healthier futures for children, including those with EB.