I am riding in my 4th Courage Classic to raise awareness about epidermolsys bullosa (EB) and support all children with special medical needs.
EB is a group of uncommon 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 EB team helps patients live their best lives possible, by optimizing their health and quality of life, and by finding better treatments through clinical and translational research. We are one of only a few centers in the US offering clinical trials of emerging treatments for EB.
Many of our patients with EB from the Denver metro area receive their primary care in the Special Care Clinic (SCC) at Children's Hospital Colorado, a unique medical home for children with complex medical needs. Some of the wonderful providers in SCC are key members of our EB team. To celebrate and support this partnership, I am riding with team Special Forces this year. The health and well being of our patients with EB would not be optimized without the devotion of pediatric providers who understand EB.
Throughout my career, my patients with EB and their families have taught me invaluable lessons about COURAGE and LIVING COURAGEOUSLY. By riding in the Courage Classic, I'm honoring my patients and their families. Your generous support allows Children's Hospital Colorado to cotinue its mission of supporting positive outcomes and healthier futures for children, including those with EB.