I turned 40 this year and decided to run my very first half marathon Sept. 10. I run For EB Research. Please help me by donating to run for EB Research! 100% of donations go directly to Dr. Tolar who is doing amazing work with EB Research! We NEED to find a cure! We lost our sons Anthony and James to this horrific genetic skin disorder! This will also explain my love for butterflys!! Our boys had Junctional EB which most don't live to see the age of 1. Anthony was 10 weeks and James 4 weeks. Also please check matchinggifts.com/umn to see if your emplyer matches donations made. If you prefer to donate by check please make it out to University of Minnesota Foundation with I refuse EB in the memo and you can mail it to me. Thanks for your prayers and support!
For those that don't know what EB is this is from the Debra.org website.
Epidermolysis Bullosa (EB) — "The Worst Disease You've Never Heard Of."
Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.
Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly. The severity of EB is generally dependent upon many factors including type, subtype, and inheritance pattern. EB has been categorized as encompassing 5 major types (Simplex, Junctional, Dystrophic, Kindler Syndrome, Aquisita) and 31 subtypes.