20-05-2025
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.
