EB Research Partnership is delighted to announce that Nitro Circus legend Cam (Sincs) Sinclair has officially joined our team as Ambassador. Cam has been actively involved with EBRP Aus for years, he is a wonderful contributor and is often seen at events. We’ve loved working with Cam over the years and we are excited to make it official. Download media release
Welcome to our team Cam!!
Tough Tilly, the two-year-old half-sister of Centenario, faces her biggest challenge yet this Saturday night at Tabcorp Park – and true to her namesake, she’s ready to put up a fight.
The filly is named after Tilly Wilkes, an inspirational 9-year-old who was born with Epidermolysis Bullosa, a rare genetic condition that results in wounds that never heal, disfigurement, blisters, bleeding, and ever-present pain…..Download Media Release
ProQR Therapeutics announced the strategic spin out of all Dystrophic EB (DEB) activities into Wings Therapeutics, a new company formed and financed by EB Research Partnership. Wings Therapeutics will continue to conduct clinical trials of QR-313 in exon 73 and progress other RNA molecules designed for other DEB mutations. Read the full press release
Creator by WeWork featured EBRP in a piece highlighting our innovative venture philanthropy model that is changing the way nonprofits think about fundraising and expediting the path to treatments and cures for EB. Read the article.
“When we asked Emily very early on how we could help, she said, ‘you can help me by finding a cure for my daughter,’” says Kristan Fletcher Khtikian to the The Boston Globe. In response, 10 lifelong friends of EBRP Board Member and mother to Elodie, Emily Kubik, founded the Plunge for Elodie in 2018. Over the past 3 years, the #PlungeForElodie has raised over $600,000.
In honor of Rare Disease Day, EB Research Partnership announced the 3rd annual Plunge For Elodie will be held on March 7 & 8 and has become an international event with five plunge locations. Orginally a small hometown fundraiser, the goal this year is $300,000, all of which benefits EB Research Partnership. Click the button below to read the full press release.