Latest news with #AinsworthEndometriosisResearchInstitute
ABC News
20-05-2025
- Health
- ABC News
Endometriosis research institute to be set up in Sydney after record-breaking $50m donation
A Sydney university says it has received the single largest donation for endometriosis research in the world. The donation of $50 million to the University of New South Wales (UNSW) will establish the national Ainsworth Endometriosis Research Institute, with the goal of accelerating breakthroughs in diagnosis and creating precision-based treatments. Endometriosis is a chronic disease where tissue similar to the lining of the uterus grows outside of the organ, often resulting in severe pain or inflammation and can also affect fertility. It is estimated one in seven Australian women have the medical condition by the age of 44, but there are still major delays in diagnosis and treatment. The average time to get diagnosed is about seven years. UNSW said the donation — which will be spread over a decade — was also the biggest donation to women's health ever in Australia. "This major partnership positions Australia as a global leader in endometriosis research and women's health, aiming to fast-track diagnosis, improve treatments and change outcomes for the estimated 200 million people living with the disease globally," a spokesperson said. The university said the institute will work with scientists, clinicians and philanthropists from around the globe — including England, Canada, Denmark, India and the USA. The donor, the Ainsworth family, made its fortune from poker machines, with businessman Len Ainsworth founding the second-largest gaming company in the world, Aristocrat Leisure. The Endometriosis Coalition welcomed the announcement and said it would help efforts to better understand, diagnose and treat the condition. "Endometriosis … costs the Australian economy an estimated $9.7 billion annually," the peak body said. "Yet until now, investment in understanding the condition has been fragmented and underfunded." This year, the World Economic Forum named the condition one of the nine diseases most affecting the lives of women, their communities and the global economy. Many advocates and experts have said research funding has historically lagged behind other chronic conditions, ultimately limiting understanding of the disease and slowing down progress in diagnosis and treatment. Those experiencing symptoms have also reported facing years of stigma and dismissal by healthcare providers. Coalition chair Jessica Taylor said the announcement was a pivotal moment for the sector. "We have always said if we want a cure, we must first understand the disease," Ms Taylor said. "Today's announcement answers that call and backs it with a dedicated research institute."
Perth Now
20-05-2025
- Health
- Perth Now
Lived experience drives $50 million endometriosis gift
A record-breaking $50 million donation will establish a world-first endometriosis research institute at a Sydney university, made possible after a family's personal experience with the disease. UNSW Sydney will establish the Ainsworth Endometriosis Research Institute (AERI), thanks to a philanthropic donation by the Ainsworth family. Lily Ainsworth and her mother Anna have both experienced the chronic pain and uncertainty that comes with endometriosis. It is a condition where tissue similar to the lining of the uterus is found outside the uterus, causing severe pelvic pain, fatigue and in some cases infertility. Endometriosis is estimated to affect more than one million Australian women and girls and about 200 million people globally. "I've had endo pain since I was 15 years old," Lily Ainsworth said. "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." Many people with endometriosis endure years of symptoms without answers, waiting an average six to eight years for an accurate diagnosis. Ms Ainsworth said the institute was about more than research, it was about hope. "Hope for those living with endometriosis now and in the future, that they will be able to live full, happy and healthy lives," she said. In Australia, the economic burden of endometriosis is estimated to be between $7.4 billion and $9.7 billion annually. The AERI will bring top scientists, clinicians, and philanthropists together from around the world to accelerate diagnosis breakthroughs and create precision-based treatments. The institute aims to fast-track new understandings of the disease by focusing on genomic research, biorepositories and advanced testing. The record-breaking funding is the largest known philanthropic donation by a family to endometriosis research globally and women's health in Australia.
