Carson and Kolbe Kissell, sons of Kristy & David, were born with a rare genetic skin disease called Epidermolysis Bullosa (EB). EB is characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor friction or trauma. Living with EB requires extensive daily dressing changes to help heal wounds and protect from further damage. On average, a complete dressing change takes three to four hours to complete. People with EB are often associated with butterflies, because their skin is as fragile as a butterfly’s wings. Currently, there is no cure for EB.
Family and friends of the Kissell Family started the Walk for EB in 2008 with the hopes of making a positive impact on awareness, efforts to find a cure, and support for EB families. Inspired by these two little boys who are so full of life, the Walk for EB is the major initiative put on by the EB Hope Foundation, a 501C3 non-profit organization. Donation to the Walk for EB are used to support organizations committed to providing care for EB families and/or funding research efforts to find a cure.
This year's Walk for EB is taking place on Saturday, May 12 at Miami Whitewater Forest in Cincinnati, Ohio. Activities and registration begin at 9:00 a.m. with the walk starting at 10:00 a.m. We hope you will invite your family and friends, and be a part of this year’s Walk for EB.
Visit www.WalkforEB.org to learn more.