An individual with EB lacks a critical protein that binds the layers of skin together. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and constant gaping open wounds. EB affects the body inside and out. Blisters occur all over the body, as well as in the eyes, mouth, esophagus, and other internal organs. Living with EB is like living with third degree burns.
Sufferers can spend hours everyday being bandaged with dressings to protect and medicate their wounds. EB causes severe pain, disfigurement, and in too many cases, an early death from systemic failure, infection or from aggressive forms of skin cancer. And because most people have never heard of EB, a lack of research holds back an end to this devastating condition.
Donna is a Director of the EB Research Foundation and our National Coordinator. She is responsible for everyday management, implementation and execution of business objectives and coordination of events. She brings an enormous amount of passion and determination to find a cure. Donna was introduced to EB in 2011, the day her niece Tilly was born. Donna is also a co-founder of the Cotton Ball.
Scott is an entrepreneur, a member of the Order of Australia and Chief Executive of the successful Johns Lyng Group of global companies. Scott has raised millions for the various charities he supports and is the Founder of the Star Ball, raising funds for seriously ill children.
Mark is an entrepreneur with significant experience in building commercial success stories, both nationally and internationally. He is a committed philanthropist who has made an enormous contribution to the many charity organisations he supports and to the broader Australian community.
Corey operates a successful business in the Access & Equipment Hire industry and is a co-founder of the Cotton Ball. Corey’s daughter Tilly was born with EB in 2011 and is the inspiration behind the EB Research Foundation. Corey made a promise to his daughter that he will find a cure for EB. Corey is extremely
driven to deliver his promise to his little girl.
Ashley is the owner of a strategic town-planning consultancy and has a lifelong connection to Corey and his family. Ashley is co-founder of the Cotton Ball and a driving force behind the EB Research Foundation.
Erica is Group Director and Executive Assistant to Scott Didier AM at the Johns Lyng Group. She brings a wealth of international experience and organisational skill at a corporate Board level. She is very proud of the work the EB Research
Foundation does and grateful for the support of those whose donation of services, goods and funds make EBRF a reality.
John is a scientist and successful businessman with vast global experience in research and the commercialisation of pharmaceuticals. He is the former CEO and founder of Link Healthcare and ex-chairman of Debra Australia. We are excited to have John lead our Scientific Advisory Committee.