On what it 
takes to change the story of endometriosis

Lily Ainsworth: From when I was in primary school, around eight years old, I remember mum racing off for her volunteering with Youth Off The Streets.  She’d come home with stories of the young people who she met and the difficult situations they were in, but I also remember her talking about the joy in sharing their achievements, and from the time she spent with the young people. I always understood that giving was part of our daily life; it wasn’t even an expectation because it was just what we did in our family.



Anna Ainsworth:
I was born in Quirindi NSW and lived in Inverell for primary school. Ours was a big family of 11 siblings. We probably did not have a lot financially, but none of us realised that at the time. We always had plenty to eat as my mother loved cooking, clothes to wear, and we cared for each other.

Anna Ainsworth: Giving has always been part of our DNA. Whatever socioeconomic level we’ve been at, we’ve always found a way to give. And now that we have the privilege to give financially as well as with our time, the main driver is to support others I believe that every child in the world deserves to be cherished and cared for. Each is as precious as the next. Although it can’t balance out the inequities, because there's never balance, doing this work and giving our respect and attention to these different issues is really important. Everyone is human and deserves respect.  

Lily Ainsworth: I agree that what drives us to give is a deep respect for others, and a desire to see people get the help, support, and services they need. But I also see it as a responsibility, and one that is a privilege to have. We're very fortunate that we don’t have to work seven days a week just to cover the bills, which means that we have some flexibility in our work and home lives. It’s my responsibility to use my good fortune to give back in whatever way I can. The gift I get in return is working with the exceptional people both running and accessing the charities and social enterprises we work with.

Lily Ainsworth: Through the Grevillea Foundation, the Ainsworth Family are giving $50 million over the next 10 years to fund and support scientific research into endometriosis. We’re doing this in partnership with UNSW Sydney through our newly established, Ainsworth Endometriosis Research Institute (AERI). This will be a world first institute dedicated entirely to understanding, diagnosing, and treating endometriosis.

The AERI will bring together philanthropists, scientists, and clinicians to tackle the clinical, social, and economic impacts of endometriosis — because real solutions require real investment.

Endometriosis is not an unsolvable mystery — it simply hasn’t had the dedicated funding and focus needed to unravel and understand it.

It’s wild to think that we can make this kind of impact and it’s quite different for us to be thinking so big. Historically, most of our work has been in close knit communities and smaller organisations, which is so rewarding and valuable, but when all these different circumstances suddenly came together, we realised this big goal was possible.

Firstly, I have endometriosis, and we have other family members who also suffer badly with endometriosis, which fits the statistics given one in seven women have it. Secondly, we're in a position to give. And thirdly, we've met the right people over the past 10 months who have been as enthusiastic and as bold as we are. The benefit of undertaking a big initiative like this is that you get access to the best brains in the business, and it's been an absolute privilege learning from all of these people along the way. 

Anna Ainsworth: Yes, there’s definitely an advantage to starting from a place where you don't know anything, because that's exactly where we started! We knew we wanted to make a significant impact and “shift the dial” on the understanding of endometriosis. but we didn't know how to move into that space. Things fell into place because we were totally open to listening to people, to take on their experience, and collaborate on the best way we could make this work. It’s been important for us to realise that it might not be perfect first up, but we will work as hard as we can and do the best we can. It’s the researchers we’re working with who are the real heroes.

Anna Ainsworth: We didn't make the decision to give $50 million over 10 years ourselves. Instead, we asked the researchers, what it would take to make a significant difference for people living with endometriosis, and for future generations. Their response was that we needed long-term funding to grow a community of researchers in this space. This became $50 million over 10 years.

There is nothing worse for a parent than watching your child suffer. Right now, millions of girls and women in Australia and around the world are suffering from a devastating disease which has for too long been left in the shadows, ignored as a ‘women’s problem’. We have the power to change the future for those women, and for generations to come.

Lily Ainsworth: One thing we’ve learned from all the researchers and clinicians, is that it’s a real challenge for young scientists and researchers to have secure careers in endometriosis research. There’s just not enough funding to sustain them past the first year or two. So, we decided that if we were going to make an impact in this space, we needed to make it possible for these brilliant young minds to stay in the area of endometriosis research and progress the science.

We want to ensure that this project is committed to, and funded properly, so it can create the blueprint for a national and international approach to understanding endometriosis better and improving the situation for all those with endometriosis now, and for future generations.

Anna Ainsworth:
In August 2024, I went to the Round House at the University of NSW to listen to a conversation between Professor Caroline Ford and obstetrician, gynaecologist Professor Jen Gunter, who was visiting Australia on a book launch. The closing question from the audience was what the next important step in women's health should be? Professor Gunter answered that if she was Melinda Gates and had a zillion dollars, she’d throw every cent to endometriosis research. That was a light bulb moment -- I am not Melinda Gates, but maybe our family could do something significant. I met Professor Caroline Ford on the night, and our journey began. We then met Professor Jason Abbott and started our conversations. We engaged our long-term friend, Melissa Smith from Noble Ambition, to guide us. Melissa introduced us to other philanthropists who were supporting health initiatives. These opportunities developed our understanding of what was important to us, in achieving our goal to shift the dial on endometriosis. The combination of our work with the researchers and Melissa creating a bold vision together - brought us to where we are today.

Lily Ainsworth: We’ve been donating to endometriosis research for a couple of years and although we’d started thinking about doing more, it wasn’t until mum came home from that event that we thought maybe now is the time. Since August 2024, our weeks have become progressively more focused on this initiative, and it’s just snowballed.


One of my biggest learnings over the past ten months has been figuring out how to give and advocate in a public way, while also doing the best thing for my young family and our privacy. I think this will be a constant battle when working in the public arena, but I do want to be public on this issue because it sends a massive signal to society that women's health matters and we still don't know enough about it.

Women with endometriosis are suffering and carrying this heavy load every day. A friend of mine has endo, similar to me – lots of pain and constant flare-ups while trying to work and take care of her children. When I told her about AERI she burst into tears, because the fact that her life could look different in ten years’ time was truly overwhelming.

There are so many women around the world suffering from endometriosis. We want to give them the opportunity to imagine a future where their endo is understood and manageable, and they can live full, healthy lives.

Anna Ainsworth: For me, the fact that it’s the largest gift is irrelevant. It's about what it would take to make a difference. Earlier this year, I saw a line of little five-year old girls, who were just starting school, walking along the street with their mummies. They were so full of potential and excitement, and it hit me that one in seven of them will have to deal with endometriosis at some point in their lives. I will do anything I can to change that story, for them and for every little girl anywhere in the world.

Lily Ainsworth:
I'm proud that our family has come together to make this investment into endometriosis. And I agree, the thing that is most exciting is not how much money is being given, but that a lot of women’s lives will actually improve because of this, on both a national and international scale. And I hope it encourages other people who have the capacity to give, to think big and to act boldly as well.

Lily Ainsworth:
As a young person, I hope to see other young people stepping up to give earlier in life and that philanthropy's not seen as something that you only do once you've retired. Although this is such busy time of life, and you’re juggling work and young families, you're so engaged with society that it’s also the perfect time to jump on ideas and make things happen. I’ve gained so much from being involved in giving at this stage of life.

Anna Ainsworth: My ambition for the future of giving in Australia, and globally, is to level the playing field and ensure it is respectful and accountable from both sides. For funders to be able to listen to and gain understanding from experts and those with lived experience; and for those seeking the funds to respect the shared values and relationships that underpin the partnership.  Fundraisers play a key role in helping to navigate these respectful relationships based upon values and accountability.