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 children 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.
A large biennial Gala event called The Cotton Ball was created to raise awareness and funds for EB. The glamorous event was overwhelmingly successful, bringing much more awareness to EB in Australia! After hearing Tilly’s story, entrepreneur Scott Didier AM, a family friend of the Wilkes’, conducted his own research on the condition. Inspired by US businessman and philanthropist Larry Ruvo and his quest to cure Alzheimer’s, Scott’s drive and determination to cure Epidermolysis Bullosa echoed that of Larry, and with the Wilkes family refusing to give up hope of healing their little girl, EB Research Foundation was established in 2016 to raise significant funds to invest into science and research that will lead to a cure for Epidermolysis Bullosa.
And to advance research even further, in 2018 EB Research Foundation partnered with a US based non-profit who has an identical story to the Wilkes family. EB Research Partnership (EBRP) of USA was established in 2010 by two wonderful EB families desperate to cure their sons, with the amazing support of Jill and Ed Vedder.
To best serve a shared mission of finding treatments and cures for EB, the two non profit organisations united in July 2020, officially merging, with the EB Research Foundation adopting the new name of EB Research Partnership (Australia) Ltd.