To raise funds to invest in science & medical research that will lead to products and therapies for treating and ultimately curing Epidermolysis Bullosa, a group of life threatening skin disorders that affects individuals from birth.
When Tilly Wilkes was born with Epidermolysis Bullosa in Melbourne in 2011, it turned her family’s world upside down. The Wilkes family had never heard of Epidermolysis Bullosa and to learn of the painful and cruel life their daughter was about to face was devastating.
Once they adjusted to taking care of Tilly and learning to bathe and bandage their newborn’s open wounds, they accepted the fact that Tilly’s condition wasn’t curable, and they were inspired to create awareness amongst their wide network.
The Cotton Ball, a large biennial fundraising Gala event, was created to raise awareness and funds for EB. The glamorous event so successful, and the family refusing to give up hope of a cure, with the help of close friends, they established their own not-for-profit to raise significant funds to invest into science and medical research that will lead to a cure for Epidermolysis Bullosa.
The EB Research Foundation was established in late 2016. After conducting their own research around EB, they discovered a US based non-profit with an identical story.
EB Research Partnership (EBRP) of USA was established in 2010 by two separate EB families desperate to cure their sons. In 2108, the Australian’s partnered with the New York based organisation. With the same mission and fantastic bond, in July 2020, they officially merged joining forces with the US to become EB Research Partnership (Australia) Ltd.