Project: The Cotton Ball
Raising vital funds to support sufferers of the worst disease you have never heard of
Ashley Thompson (Director of Clause 1 Planning) is the Co-Chair of the Volunteer Organising Committee that is dedicated to raising more the $1 million dollars in support of DEBRA Australia. DEBRA is a small national organisation supporting sufferers and their families living with Epidermolysis Bullosa (EB). EB is a rare genetic disease that results in painful blistering and peeling of the skin at the slightest touch. EB children are often called ‘butterfly children’ or ‘cotton kids’ because of the fragility of their skin.
Living with EB has been likened to living with third degree burns. It requires constant bandaging, vigilance and pain relief. The disease can leave sufferers disfigured and all too often leads to fatal systemic complications. Living with EB takes a heavy physical and emotional toll for not just the sufferers, but all those around them. This little known disease has been described as the worst disease you have never heard of.
For more information please www.debra.org.au or www.thecottonball.com.au