The GIANTS will dedicate the final home game of the season to raise crucial funds for those battling Epidermolysis Bullosa (EB).
As a charity partner of the GIANTS, EBRP is thrilled to align to Members Thanks game, honouring and celebrating the support of valued GIANTS members while celebrating the courage of those battling EB, and all rare diseases, worldwide.
At quarter time on Sunday, all attendees will be invited to participate in the #StandUpforEB initiative. Those in attendance will be encouraged to participate in the butterfly wings activation. By standing together, we can demonstrate our collective support and solidarity for those battling EB, showcasing how community actions, both big and small, can drive GIANT change.
One lucky person in the crowd will win a footy signed by the GIANTS team.
Established in 2010, EBRP was founded by dedicated families along with Jill and Eddie Vedder of Pearl Jam, who share a common goal to find a cure for the life-threatening skin disease.
Lethal for many of the children born with it, EB damages not just the skin we see but the connective tissues and organs inside the body. It results in wounds that never heal, disfigurement, blisters, bleeding, and ever-present pain.
EBRP is dedicated to finding treatments, and ultimately a cure, for this group of life-threatening diseases that affects children from birth. Through an innovative Venture Philanthropy model, EBRP raises funds to invest in cutting-edge science and medical research at top institutions around the world, including projects at University of South Australia.
Those born with EB are called "butterfly children" because their skin is as fragile as a butterfly's wings. Sunday's match will attempt to break a stadium record for the most people wearing butterfly wings to show support for this heroic community of patients and families.
“We are thrilled to continue to partner with EBRP, they are a wonderful organisation dedicated to supporting people in need, and particularly children,” GIANTS Chief Executive Officer, David Matthews said.
“The work they do to raise funds for such a meaningful cause it to be truly commended and we’re looking forward to helping raise awareness for the amazing work they do.
“We are hoping that together we can help make a difference and play our part in helping find treatments, and hopefully a cure, for this debilitating disease.”
EB Research Partnership CEO Michael Hund said he was grateful for the GIANTS joining the worldwide team supporting EBRP’s goal to cure EB by 2030 and create a model that can impact thousands of other rare diseases.
“Children battling EB inspire us to fight this disease with urgency and determination,” Mr Hund said.
“They show bravery, grit, and heroism each day. These are the same traits we see the GIANTS players and staff bring to each game.
“Our mission is to cure EB by 2030, and we are honoured that the GIANTS will join this fight alongside us.”
To donate to EB Research Partnership, visit ebresearch.org.au or text RARE to 0476 000 111.
