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 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 held to raise funds for EB. The event so successful and refusing to give up hope of a cure, the family with some close friends, decided to establish 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.
With the support of the right people, the EB Research Foundation was established in late 2016. After researching leaders in the field, the EB Research Foundation discovered another not-for-profit based in the USA with an identical story to ours.
EB Research Partnership (EBRP) was established by two EB families desperate to cure their sons. The EB Research Foundation partnered with the New York based team in 2018 and in July 2020, merged with the leaders becoming EB Research Partnership (Australia) and joining forces to expedite a cure for all types of EB as quickly as possible.