A completely non-technical post for a change.
Last weekend, seven employees of LINBIT’s European division participated in the World Games of Mountain Biking in Saalbach-Hinterglemm, Austria. We took part as Marathon race participants and co-sponsors of Biking for Butterfly Children, a charity dedicated to the fight against epidermolysis bullosa (EB).
Currently, no cure for any of the over 30 subtypes of EB exists — dermatologists and care givers can, however, greatly improve patients’
quality of life. Still, EB can be an excruciatingly painful, disfiguring, and debilitating disease that affects one in 20,000 live births and as such, makes the condition an orphan disease. The health care industry has little incentive to research the condition (as there is little money to be made off of it), and those who dedicate their careers to EB patient care and research rely on charitable donations for funding. Biking for Butterfly Children acts as a reliable fund raiser rounding up much-needed donations in the course of amateur cycling events (such as the World Games).
During this year’s World Games, B4BC raised a total of about 7,000 euros in donations — a respectable sum for an all-amateur event, but a lot more money is needed to improve the quality of life of EB patients, and potentially discover a cure to the disease. If you consider joining the fight against EB, please contact your local DebRA chapter.