The GIANTS are proud to announce the extension of their partnership with EB Research Partnership Australia (EBRPA), continuing a powerful alliance now entering its third year.
As the club reaffirms its commitment to supporting Australians living with Epidermolysis Bullosa (EB), the extension coincides with the global Netflix release of the powerful new documentary Matter of Time, bringing unprecedented international attention to the urgent race to cure EB.
Founded in 2010 by dedicated families alongside Jill and Eddie Vedder of Pearl Jam, EBRP (US) was established with one clear goal: to fund research that will treat - and ultimately cure - EB.
EB Research Partnership Australia (EBRPA) is the Australian arm of this global network, funding and supporting cutting-edge research aimed at stopping EB at its genetic source.
Often referred to as “butterfly skin,” EB is a rare and devastating genetic condition affecting approximately 1,500 Australians that leaves skin as fragile as a butterfly’s wings. Caused by inherited gene mutations, EB prevents the layers of skin from binding together properly. For many children born with EB, even the slightest touch can cause severe blistering and open wounds.
Through its innovative venture philanthropy model, EBRP funds cutting-edge science and medical research at leading institutions around the world, including projects at the University of South Australia. The organisation’s mission is ambitious and urgent - to cure EB by 2030 while creating a blueprint for treating other rare diseases.
The GIANTS’ partnership extension with EBRPA comes at a pivotal moment, with Matter of Time now streaming globally on Netflix.
The documentary centres on a benefit concert hosted by Vedder at Seattle’s iconic Benaroya Hall, weaving together powerful live performances with deeply personal stories from families, researchers and clinicians working tirelessly to change the future of EB.
Honest, confronting and hopeful, the film captures both the relentless reality of EB and the growing global momentum to find a cure. The film premiered at the Tribeca Film Festival in 2025 and has since screened at international festivals including the Nashville Film Festival, where it won Best Feature Music Documentary, and the San Diego International Film Festival, where it received Best Picture.
For Australian families living with EB, the Netflix release represents far more than a documentary premiere.
The film’s impact is deeply personal for Nathan Burmeister, Australian Board Chair of EB Research Partnership Australia, and father of a 3-year-old son living with severe EB.
“As a parent, EB never stops - there’s no break from the pain or the worry,” Mr Burmeister said.
“Seeing EB represented on a platform like Netflix is incredibly powerful. It validates what our children endure and gives families hope that meaningful change is finally within reach.”
Matter of Time also resonates strongly with Australian sporting legend Jonathan Brown, AFL great and Board member of EB Research Partnership Australia, who has a close personal connection to EB through a family friend living with the condition.
After a 40-plus city theatrical run and years of behind-the-scenes work, Matter of Time will now be available to audiences across the globe - including here in Australia.
The GIANTS’ connection to EBRPA and Pearl Jam was highlighted in 2023 when Vedder gave the club a special on-stage shoutout during his Australian tour. That moment symbolised what this partnership is all about: using big platforms to drive meaningful change.
Come Round 18 the GIANTS will once again recognise EBRPA at a dedicated match day, where fans will be encouraged to stand up for EB and show their support for families living with the condition.
