$50 million philanthropic contribution from Anna and Lily Ainsworth aims to revolutionize endometriosis research
A world-first initiative funded by members of the philanthropic Ainsworth family and led by UNSW Sydney is set to revolutionize endometriosis research, diagnosis, and treatment for millions of people suffering from it worldwide.
Three generations of the Ainsworth family, led by Anna and Lily Ainsworth, together committed $50 million over 10 years to establish the Ainsworth Endometriosis Research Institute (AERI) at UNSW. The partnership will position Australia as a global leader in women’s health and the fight against endometriosis.
Endometriosis is a condition where tissue similar to the lining of the uterus is found outside the uterus, often causing severe pelvic pain, fatigue, and, in some cases, infertility. It is estimated that one in seven Australian women will have endometriosis by age 49, impacting their health, fertility, careers, and daily lives. This equates to around 830,000 people in Australia.
Globally, about 200 million people suffer from endometriosis, with one in three people with endometriosis experiencing infertility. Many people with endometriosis endure years of symptoms without answers, waiting six to eight years on average for an accurate diagnosis.
Endometriosis is a significant global challenge with far-reaching social and economic consequences. In 2025, the World Economic Forum named it one of the nine diseases most affecting women, their communities, and the global economy. The economic burden of endometriosis on Australia alone is estimated to be between $7.4 billion and $9.7 billion annually.
AERI will adopt a global consortia-based approach to research bringing together top scientists, clinicians, and philanthropists from around the world – including England, Canada, Denmark, India and the USA – to unlock a continuous pipeline of scientific discoveries.
The aim is to accelerate breakthroughs in diagnosis and create precision-based treatments. By focusing on genomic research, biorepositories, and advanced testing, AERI will fast-track new understandings of endometriosis, moving beyond current medical limitations.
The contribution from the Ainsworths is record-breaking—the most significant known philanthropic contribution to endometriosis research globally and women’s health in Australia. It is also the largest philanthropic donation ever received by UNSW.
AERI has been made possible by three branches of the Ainsworths who have been impacted by and care deeply about those with endometriosis: Lily, Greg, Anna and Simon Ainsworth, Paul and Valeria Ainsworth, and Len Ainsworth.
Lily Ainsworth, who has lived with endometriosis since she was a teenager, and her mother, Anna Ainsworth, have experienced firsthand the chronic pain and uncertainty that comes with the disease. The family is determined to improve the outcomes of endometriosis for millions of people worldwide. Experts indicate that scientific progress in this area has lagged, with current understanding of endometriosis similar to where breast cancer research was in the 1970s.
“I’ve had endo pain since I was 15 years old. While my fertility hasn’t been impacted, I experience chronic, daily pain and severe flare ups that debilitate me for days or weeks on end,” Lily Ainsworth said.
“Like many others, endometriosis has affected my education, my career, my relationships, my family, and dictates how I go about each and every day. This reality is shared with millions of people living with endo around Australia and the world. We believe this can change. The Ainsworth Endometriosis Research Institute is more than an exceptional research institute; it is hope. Hope for those living with endometriosis now and in the future, that they will be able to live full, happy and healthy lives.”
UNSW Vice-Chancellor and President Professor Attila Brungs highlighted the transformative nature of the contribution and its significant societal impact.
“I would like to thank the Ainsworth family for their generosity and the positive societal impact it will enable. The University and its partners are incredibly honoured to be at the forefront of this groundbreaking initiative together with the Ainsworth family,” Prof. Brungs said.
“The Ainsworth Endometriosis Research Institute represents an historic moment in women’s health. This unprecedented collaboration will not only form the future of endometriosis research but also accelerate our ability to provide real, tangible solutions that quite literally change the lives of each of the hundreds of millions of people globally impacted by this condition.”
Despite the widespread prevalence of the disease, current research remains underfunded and underdeveloped, leaving millions of people without adequate care. Furthermore, research is poorly integrated with clinical practice right now. A diagnosis which brings a sense of relief is swiftly followed by uncertainty as treatment options are limited and not well understood.
Professor Jason Abbott is a clinician and researcher at UNSW who has dedicated his career to researching and advocating for improving diagnosis and treatment of endometriosis. He will be the Clinical Director at AERI and said the funding is a game-changer.
“Having cared for those with endometriosis for three decades it is clear to me that we must go beyond the surgery and current medical treatments to understand the disease processes,” Prof. Abbott said.
“AERI is the most significant commitment to endometriosis research that I have ever seen. The donation from the Ainsworth family provides surety to endometriosis researchers, will drive program-driven scientific discoveries and pave the way for generational change for anyone who has, or knows someone with endometriosis.”
Professor Caroline Ford, Gynecological Cancer Research Group lead at UNSW and the Scientific Director at AERI, pointed to the critical need for a strong evidence base to support medical decisions, acknowledging that the lack of investment in research has long been a barrier.
“The aim of AERI is to enable a precision medicine approach to endometriosis detection, treatment and management. Each person’s endometriosis is unique and for the best results, treatment needs to be personalized. We have seen how effective this approach can be in cancer treatment and will be applying many of the successful strategies here, such as the power of genomics and targeted treatment,” Prof. Ford said.
“In order for doctors to deliver precision medicine they need a solid evidence base to support their decisions. This has been a challenge due to a lack of investment in research. This substantial investment will allow researchers for the first time to build a solid understanding of endometriosis biology and pathogenesis that will lead to improved detection, management and treatment.”
The institute has drawn international praise with Professor Stacey Missmer, President of the World Endometriosis Society, highlighting the nation’s commitment to tackling endometriosis through groundbreaking research and advocacy initiatives.
“Australia once again leads the globe as a role model for prioritizing endometriosis awareness, knowledge, and patient-centered advocacy,” Prof. Missmer said.
“Establishment of the Endometriosis Research Institute with this dedicated funding will energize and rapidly leap-forward paradigm shifting discoveries.”
For Eimear McHugh, who was first diagnosed with endometriosis in 2016 more than a decade after experiencing her first symptoms as a teenager, a dedicated research institute will lead to improved quality of care, and ultimately, empowerment and validation for those living with the condition.
“My biggest concern in the lead up to my surgery was not ‘how will my body heal after this surgery’ or ‘how much pain will I have’, but rather ‘what if there is nothing wrong and I have wasted everybody’s time.’ I now realize that this is a common fear among presenting patients, be it in a surgical setting, an outpatient’s appointment, or simply when seeking empathy from a loved one,” McHugh said.
“Seeing skilled healthcare professionals, academics and researchers dedicating their careers to this disease gives almost an assurance that endometriosis is a credible illness, and we are worthy of such developments. AERI will ultimately move from awareness to action about endometriosis and give it the recognition that many people fail to get on their journey to diagnosis.”