TOGETHER With you, we make a difference 30 years of making a difference 1 We acknowledged our special milestone year with an equally special exhibition. Through portraits and prose, we told the stories of kids who represent each year of our Institute’s research. It would not only be a celebration of the work we do, but also the remarkable lives these children have led. A group of eight-year-olds helped tell these stories by projecting them from the handlebars of BMXs, in a special television commercial and advertising campaign that raised awareness of the Institute and thanked the WA community for its ongoing support. As we turned 30 this year, it gave us a great opportunity to come together Later, we invited the kids’ families, plus a whole host of friends, to see the exhibition in person. It was a touching experience, and one we now share with you. Throughout this with this amazing community that issue, you’ll find some of the stories; just a small snapshot of the abundance of work we’re we call Telethon Kids – our founders, doing and remain committed to pursuing. families, staff and supporters. Enjoy these kids’ beautiful portraits and take the time to read about their remarkable lives. We celebrated our achievements, They’ll change your life like they’ve changed ours. They are the reason we keep asking and recognised the children and families that answering the difficult questions; we want to help kids here, and around the world, be just inspire our work, and took a moment to that — kids. envision what kind of society we can help Miles and Isla with their portrait shape over the next 30 years, knowing that research is central to driving that change. Below left: Ashton and Ari Below right: One of the outdoor advertisements featuring Tahlea Because birthdays are so much more than cake and candles. Professor Jonathan Carapetis AM Executive Director They’re celebrations of our stories, the lives we lead, and how we’ve made an impact on the world around us. Still image from the television commercial 2 3 From little things, big things grow Fiona searches through her bookshelf and finds a rather old, well-worn book. Debossed Science with soul into the barely-held-together brown clothbound cover is the title ‘Madame Curie by Her Daughter’. Her eyes light up. “I read this book, between the ages of 11 and 14, about ten times. It was hugely influential on me,” she excitedly explains. “That kind of almost romantic idea of Marie Curie and science being so dramatic and wonderful.” She’s a scientist who has amassed The book was awarded to Fiona as a primary school prize. a wealth of experience, accolades However, despite the fervency with which she read it, it wasn’t her only foray into a world full of test tubes, lab and achievements. With her rigorous coats and the impact of science on the greater public. pursuit of data and medical research, Fiona watched wide-eyed, as her father, microbiologist she changed thousands of lives Professor Neville Stanley, worked on a vaccine in his across generations of children. commitment to preventing polio in the 1940s and 1950s. Her heart is stretched wide across “That was my beginning. There was always this sense of Australia, with a particular soft spot science being exciting and making a difference in the reserved for Aboriginal communities; world.” and she’s proven the humble slice of bread can still truly be the best thing. As a kid, Fiona has said she would dream she would sail “out to all the undiscovered islands and inoculate the inhabitants in a whirlwind race to conquer disease and And, of course, Professor Fiona pestilence”. Stanley is also Telethon Kids Institute’s Founding Director Now, sitting at her kitchen table, Fiona is reflecting on an and Patron. esteemed career, 30 years of which were spent as founding director of Telethon Kids Institute. “What’s rather gorgeous is to sit here and look back and say: ‘happy birthday to ourselves’. With an incredible career under her belt, Fiona’s attention has slowly been “We had no idea that we would be so successful. And that’s such a source of pride and joy. turning to some new experiences and favourite pastimes; mentoring “I am very proud. I’m so very proud of all the stories and the people that have been in the Institute and the next generation of scientists and the work that they’ve done.” researchers, embracing her lifelong love of reading, swimming and A woman takes on the world bushwalking, and soaking up all the love from her extended family While Fiona couldn’t have imagined the impact that only this young-at-heart Telethon Kids has had on the local, national and international community and the lives of children grandmother can. around the world, she also mightn’t have imagined her career path itself. Here she reveals to you our reader, how she first fell in love with the She was once a woman studying medicine in a scientific realm, her dreams for WA sea of men. And even though that didn’t faze her one iota, Fiona’s vision of her career was kids’ health, and her reflections on soon challenged. While clinical medicine could the Institute turning 30 years young. have very much been her ongoing reality, she found it agonising. “I was very anguished about Aboriginal children who came into hospital so ill, and yet they’d come from environments that seemed to have caused the problems in the first place. 4 5 “To me that was not a logical way to do internationally and it was a dream to replicate medicine. So that’s what drove me. The enormity that same success here, in Perth. of the problems.” “There’s a flavour around the Institute that Fiona left Australia because of her despondency acknowledges that a society that is good for about Aboriginal health. As it turns out, this was children, that grows children well, that values to be the very move that cemented her future parents, that appreciates the 70,000 years of as a leading researcher in Aboriginal children’s Aboriginal history, that cultural environments are health. important — that kind of approach has led to an Institute, that as Steve Zubrick (Head of Brain and At one of the top institutes in the world — the Behaviour research, colleague and friend) says, London School of Hygiene and Topical Medicine produces ‘science with soul’.” — while undertaking a Master in Public Health, Fiona discovered epidemiology. Something that seems to weave itself through every topic of conversation that Fiona enters “All the lights turned on. into is her real embrace of community. “I thought, ‘this is the way I’m going to practice “My hope for the Institute is that we keep doing medicine. I’m going to be a researcher in public the very best science that is really relevant for health’,” she reminisces. children and young people, that we don’t shy away from the hard stuff, and that the science “And I’ve never looked back.” stays within a very strong community focus. “To have that incredible relationship with the Not all heroes A bold beginning community has been really amazing for us.” They say an organisation is so much more than Regardless of whether she’s talking about the wear lab coats its bricks and mortar. While no one recognises Western Australian public, the staff at Telethon this more than Fiona, it is in fact her founding Kids, or the countless volunteers, participants principles that are the very makings of that tenet and givers that support the research — it is clear itself. she values each and every one. In 1989, Professor Stanley and Professor Carol Bower’s research revealed the key role of “We share our problems and our vulnerability “The stories of people who have succeeded dietary folate in reducing the number of together. And that’s really more caring.” because the Institute was there, that’s an babies born with neural tube defects. This immense source of pride. All the people who ground-breaking research impacted future Thirty years ago, Fiona can remember telling have contributed — the state, the population, all generations the world over. Because of the potential funders that the Institute would have the Telethons. findings, bread is now fortified with folate. When Fiona became patron of Telethon Kids, a major impact on the health and wellbeing of the Fiona Stanley Circle was founded as a children in society. The founders modelled the “It’s been a great journey.” You mightn’t think twice about spreading way for people who share Fiona’s vision and Institute on other successful ones nationally and your morning toast with butter and jam. But values to support the Institute by leaving a gift that humble slice of bread has helped save in their Wills. She loved the idea of bringing generations of children from experiencing together forward-thinking people who want conditions like spina bifida. the Institute to have a long and bright future. And it’s people donating, fundraising and “We offer them the opportunity to leave a leaving gifts in their Will to Telethon Kids that gift in their Will to something that is a really really help make all the difference. Every exciting, innovative way to reduce the impact single gift counts. of disease and death. Kids being able to participate in society,” she explains. “Leaving a gift in your Will to the Institute is very special. “What a gift in your Will to the Institute could To learn more about how mean is that you can actually impact a whole you can be part of the Fiona generation to improve,” says Fiona.