I continue to participate in endurance events to raise funds to develop a cure for EB, epidermolysis bullosa. EB is a cause that is important to me and I'm supporting the EB Research Partnership. This is my fundraiser for 2020!
FIND A CURE. HEAL EB.
The EB Research Partnership is a nonprofit organization committed to advancing treatments and finding a cure for Epidermolysis Bullosa (“EB”), a group of devastating, painful, and currently incurable blistering disorders that affects children from birth. The EB Research Partnership is committed to advancing treatments and finding a cure so that children with EB can grow up to live full, pain-free lives.
Children who suffer from this rare and life-threatening condition have skin that is as fragile as a butterfly's wings. Their skin blisters and sheers off the body from minimal friction, leading to severe pain, disfigurement, and wounds that never heal.
Practically speaking, an individual who suffers from EB lacks a critical protein that binds his or her layers of skin together. Imagine your skin being as fragile as a butterfly's wings. Imagine every movement you make causing your skin to shear off your body.
Curing a rare disease is always a race against the clock. But curing EB is a race against a clock moving at warp speed. Children with severe forms of EB have a 60% risk of dying by age 15, and nearly a 100% chance of developing an aggressive, painful and fatal form of skin cancer over the course of his or her shortened life.
But, there is good news . . . There is tremendously encouraging work underway, and a cure for EB could be within our grasp. The EB Research Partnership has already funded key research projects and is excited to collaborate with the brilliant scientists working on a cure for EB.
Selection of events I have participated in or hope to participate in in 2020:
Wings for Life World Run - May 3
Witiker Backyard Ultra - June 27-29
Swissalpine K68 - July 25
Swedish Marathon Championships - September 5
Lidingöloppet 30km - September 26
Big Dog's Backyard Ultra - October 17-