Statement of EB Research Partnership Australia

Contrary to a recent media story, EB Research Partnership (Australia) Limited has not sought to prevent the use of Tilly Wilkes’ name and has not demanded monies from Cure EB in connection with “Tough Tilly Day”.  To the contrary, EBRP fully supports Tilly and her family and will continue to help Tilly, her family, and others to fight Epidermolysis Bullosa (EB) in every way possible.  For these reasons, it was particularly offensive, and sad, to read a recent grossly misleading and inaccurate story suggesting otherwise.

EBRP Australia owns the registered trademarks, “Tough Tilly” and “The Cotton Ball”.  EBRP Australia’s former directors have, through their new charity, Cure EB, nevertheless been using these trademarks causing confusion in the EB community.  EBRP Australia’s legal correspondence was directed to try to avoid ongoing confusion so that the public have accurate information. 

Prior to the establishment of Cure EB, EBRP Australia offered to transfer the “Tough Tilly” trademark to any new charity that might be established by EBRP Australia’s former directors.  No meaningful response to this offer was received.  Cure EB instead simply used EBRP Australia’s IP without regard for EBRP Australia’s rights, or concerns about public confusion between the organisations. 

EB Research Partnership Inc (EBRP) is proud of its work and transparency and makes public information about how funds raised are spent, and where they are directed for research.  Information on this can be found on its website: https://www.ebresearch.org/financials. EBRP Australia’s financial reports are audited annually and lodged with the Australian Charities and Not-for-profits Commission (ACNC) and can be found on the ACNC site.

EBRP and EBRP Australia are global leaders in funding research for EB, raising over $60 million since 2011.  This has supported 140+ projects worldwide, leading to 20-fold increase in clinical trials and FDA approval of two treatments in 2023.  In the previous year, a record $8 million was raised for 18 projects across five countries.  EBRP’s innovative approach has earned recognition from Yale, Harvard, MIT, Stanford, and Forbes.  They hold top charity ratings, including 4-stars from Charity Navigator and Candid’s Platinum Transparency Seal https://www.ebresearch.org/

EBRP Co-Founders Jill and Eddie Vedder are world leading warriors, at the vanguard of the fight against EB, dedicated to raising funds and awareness for the EB community.  In October 2023, Eddie’s concerts in Seattle became the largest fundraisers for EB, raising over $5 million USD. See here for details: EB Research Partnership and Jill and Eddie Vedder raised over $5M to benefit life-saving rare disease research (prnewswire.com).  Their recent concert on 17 February 2024 with Post Malone and others raised over $1 million USD for EB.  EBRP’s “Venture into Cures” events, led by the Vedders, have raised over $10 million for EB research since 2020.  EBRP is particularly proud of Chairwoman Jill Vedder and her outstanding, passionate, and forceful leadership.  Jill, Eddie, and EBRP will not be distracted, and fighting this rare and tragic disease will remain their focus.