2023 Summer Edition - Together

2023 Summer Edition

With you, we make a difference

Supporting women in STEM

Student Dayne Kelly at our Broome STEM Festival. Read more on page 14.

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CONTENTS Message from our Executive Director..............................................4 Telethon Kids scoops the pool at Premier’s Science Awards....6 A safe journey in life thanks to East Pilbara collaboration..........8 PitchFest illuminates early- to mid-career researchers................10 Board Chair continues to support emerging women in STEM.....11 Parenting author draws on Telethon Kids research......................12 Top honours for Institute stalwart......................................................13 Real-life science inspires kids in the Kimberley.............................14 Discovering why is what we do at Telethon Kids Institute..........16 Couple leave lasting impact with gift in Will...................................17 Youth mental health in the spotlight at supporter event.............18 Giving kids living with type 1 diabetes a sporting chance...........19 Parents encouraged to ‘identify and act’ with Inklings................20 Wesfarmers Centre of Vaccines and Infectious Diseases celebrates milestone partnership....................................21 Taking action on modern slavery.......................................................22 WA Governor praises Telethon Kids’ Professor for pioneering research..............................................................................23 Fantastic FUNdraising...........................................................................24 Festive colouring-in fun........................................................................26 Meet the Development Team.............................................................27

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Professor Carapetis with one-and-a-half-year-old Jovie Candido

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MESSAGE FROM OUR EXECUTIVE DIRECTOR We know that when you give to Telethon Kids Institute, you’re giving researchers the ability to find answers to challenging health problems and turn discoveries into reality for kids and families who need it most.

As a paediatrician and researcher, I witness on a daily basis the extraordinary benefits of Western Australian health and medical research to individual patients and the community.

Expectant mothers now take folate to ensure their babies are not born with neural tube defects. Spray-on-skin is improving outcomes for burn victims. We can now cure stomach ulcers with antibiotics. And new treatments and therapies are being developed for conditions ranging from stroke to childhood cancer – all because of discoveries made right here in WA. The flow-on benefits of these discoveries and innovations are enormous — for the economy, the workforce, and the healthcare system. But until now we have been unable to quantify this.

Now, thanks to a landmark report by Deloitte Access Economics, we know that every dollar invested in medical research in our State returns $2.61 in benefits to the Australian population. It proves what we’ve always intrinsically known in WA – that our medical research is world class and gives back significant value to the community and the economy.

These benefits extend far beyond Australia, impacting people all over the world, with the global return estimated at $7.68 for every dollar invested.

The report was commissioned by the Western Australian Chapter of the Association of Australian Medical Research Institutes, which includes Telethon Kids, Ear Science Institute Australia, Institute for Respiratory Health, Harry Perkins Institute of Medical Research, Lions Eye Institute and the Perron Institute for Neurological and Translational Science.

For the first time we can accurately measure the impact of some of WA’s most groundbreaking discoveries. The report reflects three critical measures of the health impacts of medical research: reduction in burden of disease, avoided costs to the health care system, and reduction in mortality.

It also highlights the health and medical research sector’s significant role in creating high-quality jobs and value in the WA economy. In 2021 alone, the WA medical research sector contributed $322.9 million and 2,632 jobs to the WA economy.

As a valued supporter of Telethon Kids, I would like to extend a heartfelt thanks for your continued dedication to child health research. Deloitte’s analysis should give you confidence that investment in medical research is helping to secure the future not just for sick kids, but for all Australians.

Professor Jonathan Carapetis AM Executive Director

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Telethon Kids scoops the pool at Premier’s Science Awards Donna Cross inducted into Science Hall of Fame Telethon Kids Institute researchers enjoyed phenomenal success at this year’s Premier’s Science Awards – the State’s peak event recognising the achievements of Western Australians working in STEM (science, technology, engineering and mathematics).

Not only was pioneering antibullying researcher, Emeritus Professor Donna Cross OAM, inducted into the WA Science Hall of Fame, recognising a 35-year career dedicated to improving the social and emotional wellbeing of children and young people, but Institute researchers either won or cowon three of the six award categories.

Emeritus Professor Cross is Australia’s leading expert on the prevention of bullying and one of the world’s most recognised and respected researchers in bullying and cyber-bullying.

Among other significant contributions to public health, her extensive schools- and community-based research has provided unique insights into bullying, including the best ways to reduce bullying and the associated long-term harm.

The results have led to significant change in the way bullying is understood, prevented and managed in schools across Australia and internationally, with Professor Cross’s work having driven or influenced every major school bullying prevention policy and most school wellbeing policies and curricula in Australia over the past few decades.

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Award winners Leading paediatric anaesthetist and researcher Professor Britta Regli-von Ungern-Sternberg, from Telethon Kids Institute, The University of Western Australia (UWA) and Perth Children’s Hospital, was named joint winner of Mid-Career Scientist of the Year, together with Professor Hongqi Sun from UWA, thanks to her globally recognised efforts to make surgery safer for babies and children of all ages.

Research and advocacy led by Professor Regli-Von Ungern-Sternberg – who heads the Perioperative Medicine Team at Telethon Kids and UWA and is a consultant paediatric anaesthetist at Perth Children’s Hospital – have led to significant changes in global practice and, consequently, a reduction in complications.

PhD student Denby Evans was named Student Scientist of the Year in recognition of her ongoing research into the scientific mystery of what causes ongoing lung disease in survivors of preterm birth. Ms Evans, from the Wal-yan Respiratory Research Centre – a powerhouse partnership between Telethon Kids Institute, Perth Children’s Hospital and Perth Children’s Hospital Foundation – and Curtin University, unlocked an entirely new field of research in the course of her PhD, with her unique discoveries around the behaviour of airway cells in preterm babies attracting international attention and influencing clinical practice.

Rebecca Famlonga, a proud Wadawurrung woman, Senior Research Officer with Telethon Kids Institute and Research Masters student with Murdoch University, became the third Aboriginal student from Telethon Kids to be named Aboriginal STEM Student of the Year since the award was introduced in 2019.

Based in Broome, Ms Famlonga switched to research after more than 20 years as a teacher and education leader. Passionate about decolonising the research process and empowering Aboriginal voices, she is working on the SToP Trial within the Healthy Skin and ARF Prevention Team at Telethon Kids to identify community-led skin health interventions in a remote Kimberley community.

The Premier’s Science Awards, administered by the Department of Jobs, Tourism, Science and Innovation, are a keystone in the State Government’s efforts to raise the profile of STEM in WA. They were announced by Minister for Science, the Hon. Stephen Dawson, at a special ceremony at the Ritz-Carlton Hotel in September.

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A safe journey in life thanks to East Pilbara collaboration

Nine-month-old Braxton Lewis had a safe start to life thanks to Journey Together

Born two weeks early, eight-month-old Braxton Lewis’ entry to the world could have been vastly different if not for a service dedicated to improving pregnancy outcomes for Aboriginal women in WA’s East Pilbara.

Living in Jigalong, a remote Aboriginal community in the Western Desert east of Newman, Braxton’s mother Chrissie Lewis had limited access to maternity care. To give birth, as with all women living in the East Pilbara, she was required to travel 600kms away to Port Hedland or to Perth – a 1300km round trip.

The Telethon Kids Institute, through the BHP-funded Journey Together initiative, is partnering with Puntukurnu Aboriginal Medical Service (PAMS) to ensure babies like Braxton have the best possible start to life.

As part of the initiative, the Newman-based PAMS is helping ensure women like Mrs Lewis are better supported when they are forced to travel to give birth at or before 36 weeks of pregnancy – and making sure they are well supported when they return home.

Telethon Kids Director of First Nations Strategy and Leadership, Associate Professor Glenn Pearson said when a woman fell pregnant in a place like Jigalong, or other remote desert communities, they faced a tough journey to give birth.

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“The long-term ambition of the Journey Together Initiative is to improve the health outcomes for Aboriginal kids and families,” Associate Professor Pearson said.

Supporting women as they are required to travel such long distances away from home, friends and family to give birth is not the only role PAMS plays to help pregnant women.

Aboriginal family support worker Michelle Mogridge makes it her business to get to know every ‘mum and bub’ in Newman and desert communities to ensure they are getting the care and support they need.

From regular antenatal checks and immunisation for their newborns, to education about the dangers of smoking and drinking

during pregnancy and how to care for their babies, Ms Mogridge ensures the East Pilbara’s mums and bubs are getting the best start in life.

“If a doctor or nurse wants to see a child or a pregnant mum, I will go and find them and take them to the clinic and make sure they are seen,” Ms Mogridge said. “We make sure they are up-to-date with their immunisations.

“I also have a yarn with them. I tell them alcohol when you are pregnant is not good.

“I get phone calls at night, people knocking on the door. They know me, they know I can help. It’s lovely to be recognised in a town and people know you can do things to help them.”

The Newman project is one of three Journey Together initiatives being undertaken by Telethon Kids thanks to support from BHP through Telethon. The ground-breaking partnership combines communities, families and services and is intended to create change at the family level and through influencing evidence-based change in policy and service delivery.

Support for families in Port Hedland and Perth In Port Hedland, consultation with local Elders through Hedland Aboriginal Strong Leaders, education representatives and others identified that vulnerable families needed help navigating and accessing local support services that were already available in Port Hedland.

With the support of BHP, a research collaboration with Julyardi Aboriginal Corporation was established to develop the Kumaparniku Wraparound Service, providing critical support and service navigation for disadvantaged Aboriginal families with young children in Hedland.

unit anchored in primary health care and underpinned by an experienced nurse and multi-disciplinary team. Through the development of this model it is anticipated that more Aboriginal children will have timely and equitable access to specialist paediatric care in a culturally safe and trusted environment, providing additional support to families before and after visits, and parallel access to GPs and comprehensive primary care services.

BHP opens doors for mums and bubs BHP recently provided PAMS with access to one of their homes in Newman where a clinic has been established and mothers and their babies can find support for caring for their newborn. Ms Mogridge welcomes the mums and bubs to the home, provides advice about feeding and bathing the babies, yarns with them and even watches television with them — giving them support as they navigate motherhood.

“If you sit down and have a conversation with them, one-on-one and talk about anything and everything, then you can get to the part about why the doctor might need to see them is to check on the bubs, and then they understand why the nurse is chasing them.

You have to build trust to get their trust.”

Donations of nappies, formula, baby bottles and clothes help families keep their children fed and clothed, and also encourage mothers to return to seek help when they need it. It is a safe space and Ms Mogridge has dreams of a backyard with a playground and sand pit so she can watch the mums and bubs grow and flourish.

“I will watch these kids grow and have babies of their own and help them too. I love my job.”

The service is centred around goals identified across life domains such as employment, housing, health and family and support is provided through service navigation and brokerage to the family to achieve those goals with an ethos of client empowerment.

The aim of the project is for at-risk families with one or more children under the age of five years to achieve the goals they have identified as important for their family and increase empowerment and self-efficacy, family safety and resources.

In Perth, the Derbarl Yerrigan Health Service has developed a holistic paediatric service

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Pitchfest illuminates early to mid-career researchers Generous donors support life-changing projects At Telethon Kids Institute our greatest asset is our people, and we are strongly invested in welcoming and nurturing the best and most innovative early to mid-career researchers. However, these researchers face an increasingly competitive environment in securing research funding, which is why donor support is critical at this stage of a researcher’s career.

Earlier this year we hosted our inaugural Illuminate PitchFest event where ten passionate early- to mid-career researchers took to the stage to pitch their project to an enthusiastic room of donors. Six researchers were awarded Illuminate Awards valued at $25,000 to support their life-changing work.

The Illuminate Awards are funded by a generous community of donors and provide a unique opportunity for our researchers to launch their careers to new heights.

Dr Annabel Short was awarded the 2023 Illuminate Award supported by The Giorgetta Charity Fund, for her research focused on new treatments for children with brain tumours within the developing brain.

Since receiving her Illuminate Award, Dr Short has received a WA Child Research Fund grant to further her investigation of new treatments to amplify the response to radiotherapy for children with aggressive brain cancer.

Dr Rachael Zemek — a People’s Choice Illuminate Award winner — is now working as a Postdoctoral Research Fellow at the Fred Hutch Cancer Centre in Seattle. Her work in immunotherapy treatments for sarcoma has helped discover why some cancers do not respond well to immunotherapy. Rachael will continue her work with our Telethon Kids Cancer Centre with an honorary position.

Dr Vincent Mancini received an Illuminate Award supported by Helping Little Hands for his project ‘Healthy Fathers, Healthy Families, Healthy Babies’ and was recently awarded an Aspire Award by Business Events Perth. Funding from this award enabled Dr Mancini to travel to Tilburg University in the Netherlands to connect and share his groundbreaking neurodevelopment and parenting research.

We are excited to announce Illuminate PitchFest will be back on 21 February 2024!

To learn more about how you can support an Illuminate Award please contact Simmone – simmone.sharp@telethonkids.org.au, or by visiting https://bit.ly/IlluminateAward, to learn more about our 2023 Illuminate Award winners and PitchFest 2024.

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Board Chair continues to support emerging women in STEM A researcher dedicated to improving the lives of children with neurodevelopmental conditions is the 2023 recipient of the Julie Bishop Early- to Mid-Career Female Researcher Award.

Along with $50,000 to support her research, Dr Melissa Licari will also benefit from mentoring support from Ms Bishop, Chair of the Telethon Kids Institute.

Ms Bishop generously established the award in 2020 to support emerging women in science pursuing a child health research project of significance.

“I’ve been passionate about the work that Telethon Kids Institute does for a very long time, and yet through my political roles, including Minister for Science and Minister for Education I was aware of challenges facing career researchers – particularly women – who face a whole range of issues that make it difficult to progress in a trajectory with their research career,” she said.

Dr Licari has an international reputation for her research in Developmental Coordination Disorder (DCD). She led the delivery of the world’s largest and Australia’s first national survey on DCD (Impact for DCD) in 2020.

The survey highlighted significant disadvantage and neglect, shining a light on this underrecognised and under-supported disability.

The Julie Bishop Award will continue to support Dr Licari’s vision of improving the lives of children with neurodevelopmental conditions, by delivering Australia’s first national study to identify and address the unmet needs of children with Tourette syndrome (TS) and tic-related conditions – Impact for Tourette’s.

Impact for Tourette’s will bring together the voices of consumers, families, researchers, service providers, clinicians and the Tourette Syndrome Association of Australia.

Dr Licari said the key findings and recommendations from her research would be delivered in a national report expected to inform a clinical guideline.

“As a mother raising a child with TS, I experience the struggles and heartache every day.

This research will collect the vital evidence needed to demonstrate the impact of TS and drive changes needed to improve their lives,” Dr Licari said.

“And as a researcher I know the power of working with community to better understand their needs that will inform a clinical guideline to support all these families.”

There are various ways you can support a researcher on their journey. If you are interested in learning more about supporting one of our female researchers, call Alecia on 0409 045 071 or email alecia.benzie@telethonkids.com.au

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Parenting author draws on Telethon Kids research Proud supporter of our youth mental health program

She’s known as Australia’s unofficial grandmother, the Queen of Common Sense and one of the country’s best-known parenting authors. And now, after publishing nine books, Ms Maggie Dent is embarking on her next project — a new book to help guide parents through the teenage years.

The long-term advocate for happy, healthy kids visited Telethon Kids Institute last month to meet with our researchers and learn more about how parents can support their children through adolescence.

Associate Professor Yael Perry, Head of Youth Mental Health, briefed Ms Dent about the work her team is doing at Telethon Kids to support young people, especially those from marginalised populations who can often feel unsupported by their parents.

“It was a pleasure to guide Maggie through some of our research, which uses a range of methods — from apps and digital resources to intergenerational yarning – to ensure young people feel connected to and supported by their carers, extended family, and community.”

Ms Dent is a proud ambassador of Telethon Kids’ youth mental health program, Embrace, and has worked closely with teenagers for much of her career.

“As a former high school teacher and counsellor, I know how much teens can struggle,” Ms Dent said.

“Young people today live in a very different world to the one their parents grew up in and I want to make sure we are supporting them as best we can, so I’ve come to Telethon Kids Institute to learn more.

“If we can give parents the knowledge and skills to better support their teens, we can make a big difference.

“My latest book, Help me Help my Teen, draws from the latest research to help struggling teenagers get the support they need – even while they’re waiting to see a mental health professional.”

Ms Dent’s affiliation with the Institute goes back to the very start of her career as an author, when she generously donated some of the profits of her first book.

“I feel the work being done here is changing the lives of children all around the world. I am a big advocate of child health research here in Western Australia and have decided to bequest money in my Will to Telethon Kids Institute to ensure that research continues well into the future,” Ms Dent said.

If you’re interested in supporting youth mental health research scan the QR code and sign up to join one of our community groups today.

Ms Maggie Dent with Associate Professor Yael Perry

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Top honours for Institute stalwart Well-deserved recognition has poured in this year for Emeritus Professor Carol Bower AC – one of Telethon Kids Institute’s most humble, beloved and influential researchers.

Emeritus Professor Bower – who helped establish the Institute in 1990 as one of five founding researchers – is internationally renowned for her seminal birth defects research and advocacy, particularly around folate and neural tube defects (NTDs) and Fetal Alcohol Spectrum Disorder (FASD).

She received the nation’s highest honour in June when she was named a Companion of the Order of Australia as part of the King’s Birthday Honours, in recognition of her profound impact on child and public health over a 40-year career.

The Companion of the Order of Australia is awarded for eminent achievement and merit of the highest degree in service to Australia or humanity at large.

The move recognised Emeritus Professor Bower’s highly rigorous, landmark research across multiple major projects, her pioneering involvement of consumers and community members in research, and her tireless determination to see research translated into policy and practice that benefits the wider community.

This honour was followed by the Australian research community’s flagship award, the Peter Wills Medal, presented to Emeritus Professor Bower in November as part of the 2023 Research Australia Health and Medical Research Awards in Sydney.

The medal, created in honour of the man whose work led to the inception of Research Australia, Peter Wills AC, recognises someone who has made an outstanding, long-term contribution to building Australia’s international reputation in health and medical research, as well as fostering collaboration for better health.

Regarded as one of the world’s top epidemiologists in her field, one of Emeritus Professor Bower’s earliest achievements, with Professor Fiona Stanley AC, was identifying dietary folate’s role in preventing NTDs. The pair subsequently campaigned for 20 years to have wheat flour fortified with folic acid, a measure finally introduced in 2009. The move led to a dramatic drop in NTDs, particularly in Aboriginal populations, and in 2018 was described as one of the top 10 public health achievements of the past 20 years.

In other trailblazing work, Emeritus Professor Bower established Australia’s first birth defects registry and significantly developed the evidence base and diagnostic tools for FASD. She also led the team behind the ground-breaking Banksia Hill Project, which found 89 per cent of detainees at Banksia Hill Youth Detention Centre had undiagnosed severe neurodevelopmental impairment, including 36 per cent with Fetal Alcohol Spectrum Disorder (FASD).

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Real-life science inspires kids in the Kimberley Telethon Kids hosts inaugural STEM Festival in Broome

The Telethon Kids Institute Education and Outreach team, along with several researchers, travelled north earlier this year to join our Telethon Kids Kimberley team for the inaugural Broome Festival of STEM – organised by the Institute and the first of its kind to be held in the Kimberley.

The two-day event in August saw the Broome Civic Centre turn into a hub of activity as Telethon Kids Institute and local organisations joined forces to showcase some of the exciting STEM pathways in the area.

It was an ideal opportunity for Telethon Kids Institute to immerse the community in real-life science and dive into hands-on experiments that directly relate to the research happening right on their doorstep, while inspiring the next generation of researchers, scientists, and innovation leaders.

Telethon Kids Kimberley’s Operations Manager, Slade Sibosado, said showing kids in the Kimberley what a career in health and medical sciences could look like would encourage more students to go down that path.

“We know that getting kids excited about STEM when they’re young has huge benefits, so we were really excited to have had the team from Perth up here in Broome to meet our kids,” Mr Sibosado said.

“The kids really loved learning about how their bodies work and also getting their hands dirty with interactive experiments.”

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An interactive exhibit by Scitech saw kids learning about how angle, height and placement can increase effectiveness of mini ‘wind turbines’, and local organisations including Kimberley Land Council and Cygnet Bay Pearls gave kids a first-hand look at some of the STEM applications happening in their own backyard.

The Festival of STEM also featured a special community session, where parents, families and the local community were invited to explore the interactive space, participate in hands-on activities, enjoy live music and a free sausage sizzle, and witness STEM in action.

Telethon Kids Institute’s Executive Director Professor Jonathan Carapetis said the Broome STEM festival was part of the Institute’s commitment to families in the Kimberley.

“We run a number of significant research projects across the Kimberley which aim to improve the health and wellbeing of children in the region, so it makes perfect sense to share our popular science education program in Broome,” Professor Carapetis said.

The Broome Festival of STEM wouldn’t have been possible without the support of our key partners — Inspiring Australia, IGO Ltd, and CFC Group Foundation. This National Science Week project was supported by the Australian Government.

Scan the QR code to experience the fun of the Broome Festival of STEM.

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Discovering why is what we do at Telethon Kids Institute Our researchers are asking and answering the big questions facing child health

‘Why?’ is a powerful question. It is often where many great ideas are born and, for us at Telethon Kids Institute, where our most innovative and ambitious research starts. With more than 800 active research projects taking place within Australia and around the world, our researchers are asking why every day to ensure all kids lead happy, healthy lives.

Our individual ‘why?’ is often what drives our passion and purpose. For Childhood and Adolescent Researcher Zara Boulton, their reason for working in child health research was sparked by their own personal experience.

“As someone who grew up with depression and anxiety in adolescence, I really want to make sure that the research that we’re doing, regardless of what it is, is informed by the people that are impacted by it,” Mx Boulton said.

“There’s no guide to life, and kids and parents have all these big questions that can be left unanswered, especially in the world that we’re living in right now. I would say our research is really helping to write that guide so then kids can get the support they need, and parents and schools know how to support the kids that they’re with.

“I can think of one person who really invested their time when I was growing up – who just listened to me and accepted me no matter what and that saved my life. If I can do that for other kids with my research, it’ll mean the world to me, to know that I’ve helped them.”

Our team of experts, researchers and students are collaborating globally to improve the health and wellbeing of children and families, affected by some of the most devastating, complex, and common diseases and issues.

We recently held a community event in Adelaide to showcase the incredible work of the Early Childhood team, including practical advice for parents living in our modern world. To learn more about this research, scan the QR code.

Discovering why is what we do, but we can’t do it without you.

By supporting Telethon Kids Institute with a gift today you are creating opportunities for researchers like Zara to continue their life-changing work.

Donate today — https://bit.ly/givetotki

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Couple leave lasting impact with gift in Will

It was during a time of grief that John Mearns was inspired to make a difference.

Ten years ago, his late wife Jenny passed away after a 16-year battle with chronic lymphocytic leukaemia.

Mr Mearns’ experience of caring for a loved one with a terminal disease gave him a different perspective on the world, prompting a desire to do something meaningful.

He decided to become actively involved in research and started looking for an opportunity that would make an impact now and into the future.

Having heard about the work being done by Telethon Kids Institute on a TV advertisement, in the early 2000s he became involved in the Vaccine Trials Group (VTG).

recently made the decision to leave a gift in his Will to support this work.

“I have been so fortunate to work alongside Professor Peter Richmond and his wonderful team for several years, which has given me a truly unique opportunity to see the value of this work firsthand,” he said.

“My beautiful wife Sue and I have now been given an opportunity to share a gift that will further this work, which is easing pain and suffering – not only here in WA but potentially around the world.”

The VTG is just one example of transformational change happening at Telethon Kids Institute that is driving advocacy and empowering action to ensure all kids lead happy, healthy lives.

What we do today in medical research will change the lives of generations to come. At Telethon Kids Institute, generous supporters such as the Mearns are helping to secure that future by leaving a gift in their Will.

“It was during those years I felt the need for a better world, and after seeing the advertisement on TV about vaccine trials I decided to help by way of volunteering,” Mr Mearns said.

Led by Professor Peter Richmond, the VTG was established in 2000 to provide a coordinated approach to the development, delivery, assessment, and promotion of vaccines and treatments for infectious disease and allergy.

After being involved in the VTG for a number of years and seeing firsthand the importance and impact of the Institute’s work, Mr Mearns has For an obligation-free conversation to learn more about how your gift can create a lasting impact, please contact: Gifts in Wills Officer Kirren Fullagar T| +61 8 6319 1444 E| kirren.fullagar@telethonkids.org.au

John and Sue Mearns

To learn more about participating in research such as being involved in trials like John, scan the QR code.

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Youth mental health in the spotlight at supporter event A number of Telethon Kids Institute researchers recently sparked a thought-provoking conversation about youth mental health at Mineral Resources Limited’s Osborne Park head office.

Professor Helen Milroy AM, Dr Nicole Hill and Professor Pete Gething, along with Chris Harris, Head of Mental Health and in-house psychologist at Mineral Resources, shared a snapshot of the extraordinary work happening with community to find solutions, influence policy and improve access to services for children and their families.

Professor Jonathan Carapetis with Professor Peter Gething at the event

The mental health of our children and young people has never been a more pressing concern for our community — not just in WA or Australia but across the globe, with some saying our youth are in crisis.

In Australia, more than half of all adolescents report having been in need of support for their mental health — which is why, at Telethon Kids, we are collaborating with the community, service providers and partner organisations, including Mineral Resources Limited, to prioritise and solve the mental health challenges faced by children and young people.

That’s where Embrace comes in. Proudly supported by Principal Partner Rio Tinto, Embrace @ Telethon Kids Institute is Western Australia’s first research collaboration devoted to the mental health of children and young people aged up to 25 years.

Co-Head of Embrace and 2022 West Australian of the Year, Professor Helen Milroy, shared her thoughts about the current state of youth mental health and answered questions about how we as a community can support one another – giving guests permission to ensure we each include a little more fun in our dayto-day life.

This annual major donor event provides just a snapshot of the extraordinary work happening at Telethon Kids Institute and gives us an opportunity to bring our corporate and partner community together to say thank you, and to share our vision of happy, healthy kids.

Telethon Kids Institute would like to acknowledge Mineral Resources Limited for their ongoing support, which helps us to continue our vital research.

Interested to learn more? Have a listen to our new podcast series ‘Embracing the Mind’.

Hear from people with lived experience of mental health diagnoses and disorders and learn from some of the leading researchers in mental health on the latest treatments and advancements in their field.

Scan the QR code and download today.

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Giving kids living with type 1 diabetes a sporting chance Sport coaches across Australia will soon have access to WA-designed educational resources which aim to help coaches better understand type 1 diabetes (T1D) and encourage children living with the condition to stay in sport.

T1D is one of the most common childhood chronic conditions in Australia, with an average of three children diagnosed every day. These children need lifelong daily insulin treatment to stay alive and face increased risk of cardiovascular complications that can shorten their life expectancy.

Community sport – one of the most common forms of exercise engaged in by kids – can play a key role in helping to prevent such complications, but currently kids with T1D tend to be less active than their peers.

Research has found one of the main barriers to participating in exercise and sport, identified by young people with T1D, is a lack of knowledge and awareness of the condition by their community sport coaches. Meanwhile, sport coaches often report they lack the confidence and understanding to provide adequate support for young people living with T1D. Researchers at the Rio Tinto Children’s Diabetes Centre, a JDRF Global Centre of Excellence based at Telethon Kids Institute, have teamed up with young people living with T1D, their parents, and coaches to develop the information coaches need to safely include kids with T1D in their community sport teams.

The resources include fact sheets, posters, online material and videos presented in a clear format that are easily accessible for coaches during training sessions or in the clubrooms.

“The goal with these resources is to get them into community sports clubs so coaches have adequate knowledge and education about exercise and T1D management, so they can support their players living with T1D,” study lead Rachel Lim said.

To learn more or take part, visit https:// bit.ly/DiabetesSportsCoachingResources

“We hope these resources help young people with T1D and their parents feel more confident during community sport and encourage participation in a variety of different activities.”

Twelve-year-old Sam Mitchell (pictured), who was diagnosed with T1D at the age of eight, wanted to participate in the study to help educate coaches on how youth can best manage their T1D and play sport.

“I’ve been playing tennis competitively for three years and I hope this will educate and help people and coaches around my clubs and squads to have a better understanding of what I am dealing with, and how they can help me be my best self,” Sam said.

The research team is currently looking for more community sports coaches to pilot the resources and provide feedback before officially launching them.

This study has been funded by the Diabetes Australia Research Program (DARP) 2023 Grant Round, and the Rio Tinto Children’s Diabetes Centre, a JDRF Global Centre of Excellence.

A Paper on the study has also been published in Frontiers (November 2023).

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Parents encouraged to ‘identify and act’ with Inklings A new support program for babies is calling for parents to act on any ‘inklings’ they have that their child may be developing a little differently.

Telethon Kids Institute’s Inklings is a program to support babies aged 6-18 months who are showing early differences in their social interaction and communication development.

Backed by decades of rigorous scientific research, Inklings uses short videos of a caregiver interacting with their baby to help them to better understand the different ways their baby communicates.

In April, Federal Minister for the National Disability Insurance Agency (NDIS), the Hon. Bill Shorten MP, announced during an address to the National Press Club that Inklings would form part of NDIS reforms.

As a result of this announcement, the Inklings Program has been funded in Western Australia as part of a new partnership between the NDIS, Telethon Kids Institute, Child and Adolescent Health Service (CAHS), and WA Country Health Service. Inklings in WA will run for three years and involve 700 eligible babies across WA. Inklings builds on research conducted by Telethon Kids, La Trobe University and CAHS which reported the world’s first evidence that a therapy commenced in infancy could reduce early developmental disability to the point clinical autism diagnoses being made in early childhood were significantly reduced.

Telethon Kids’ Professor Andrew Whitehouse led the research team which made the landmark findings.

Professor Whitehouse – the Angela Wright Bennett Professor of Autism research at Telethon Kids and The University of Western Australia — said the aim of Inklings was to support families of babies who were developing differently with an evidence-based program which would enable them to gain the skills they needed to thrive.

“Babies are born with remarkable abilities to communicate but sometimes, the social and communication skills of babies can develop differently to what we tend to expect,” he said.

“Typically, these early behaviours are monitored until the age of two years, after which children may receive an assessment that leads to a diagnosis of autism. Rather than waiting until a diagnosis to start therapy, we need to identify developmental differences as early as possible.

“Inklings is based on the hypothesis that supports commencing during the first two years of life, when the first signs of atypical development are observed and the brain is rapidly developing, could lead to even greater impact on developmental outcomes in later childhood.”

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There are no outof-pocket expense for eligible families participating in Inklings in WA. Inklings in WA is now enrolling eligible families.

Can you help spread the word?

Get in touch via inklings@ telethonkids.org.au or visit inklings. org.au/wa to find out more.

Wesfarmers Centre of Vaccines and Infectious Diseases celebrates milestone partnership A decade-long partnership with Wesfarmers Ltd has helped Telethon Kids Institute researchers push the boundaries of scientific understanding and revolutionised the way we perceive and treat diseases.

Celebrating 10 years of the Institute’s Wesfarmers Centre of Vaccines and Infectious Diseases, Director Professor Chris Blyth said the Centre had been a beacon of hope and progress.

“From the laboratory bench to the patient’s bedside, from pathogen through to policy, our researchers, doctors, staff and community partners have worked collaboratively, leading to breakthroughs that have touched lives and reshaped our understanding of infections and vaccines,” Professor Blyth said.

More than 150 researchers and close collaborators marked the 10-year milestone at an event with the theme Looking Back Looking Forward, which recognised not only the Centre’s significant accomplishments, but also the research possibilities yet to be discovered.

A series of presentations delivered by 11 of the Centre’s teams showcased achievements from the past decade – and how this research has contributed to great strides in improving childhood health and well-being globally.

Wesfarmers Chief Executive Rob Scott said in a video played at the event that Wesfarmers was

immensely proud of its partnership with Telethon Kids.

“We know we can only be successful if we give back to the community in which we operate and our partnership with Telethon Kids, which we began in 1994, is a great example of giving back to the WA community,” Mr Scott said.

He said Wesfarmers had given more than $16 million to Telethon Kids over the past 30 years, enabling researchers to attract another $100 million in competitive grants to support their important work.

“The Centre has established itself as a trusted source of public health messaging on infectious diseases and vaccines, particularly during the COVID pandemic.”

Mr Scott said he was particularly proud of the Centre’s commitment to the training and development of Aboriginal team members: “This approach aligns with our commitment to Aboriginal reconciliation and will hold the Centre in good stead as it continues to spearhead community-led research.”

The Centre aims to prevent and improve the treatment of infectious diseases in children and adolescents and is committed to solving local issues, with a strong focus on translational research, by working closely with community, clinicians and policymakers.

Significant advances and impact by the Wesfarmers Centre OM Spritz — Nasal therapy to prevent childhood ear infections which are the major cause of childhood hearing loss (causing educational delay) and antibiotic use (with flow on impacts on antibiotic resistance). Production of the therapy for clinical trial is underway.

There is the potential for massive impact in WA and globally.

Endgame Strategy for Rheumatic Heart Disease — Blueprint for eliminating RHD in Australia, led by Telethon Kids, launched by then Health Minister Greg Hunt and National Aboriginal Community Controlled Health Organisation (NACCHO) head Pat Turner in 2020, and now the guiding document for the National Rheumatic Fever Strategy run by NACCHO and Federal Government.

Infectious Diseases Epidemiology — Epidemiology modelling that examined the impact of the influenza vaccine for school aged children on transmissibility, led to the free flu vaccination program for school aged children being rolled out state-wide.

Ear Health — Our Ear Portal Program ensures access to early diagnosis and intervention for urban Aboriginal infants. The telethealth-driven clinical research program remotely diagnoses and prioritises treament for children with ear infections.

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Taking action on modern slavery As an urgent human rights issue affecting children all over the world, the problem of modern slavery goes right to the heart of the Institute’s vision of ‘happy healthy kids’.

Globally, one in four of the 49.6 million victims of modern slavery are children.

To uphold our vision and enable children to thrive, the Telethon Kids Institute takes a thorough, transparent, and collaborative approach to modern slavery mitigation.

In line with the Modern Slavery Act 2018, the Institute releases a Modern Slavery Statement annually that details our approach to modern slavery identification and mitigation in our operations and supply chains.

Our operations The Institute’s staff, students, volunteers and honorary researchers are predominantly based in Australia where, according to the Global Slavery Index 2018, the risk of modern slavery is extremely low. Our recruitment processes and standards for employment are aligned with Australian legal and ethical obligations and supported by our policy framework plus health and wellbeing mechanisms.

The majority of our overseas operations are research collaborations that are subject to due diligence and an appropriate contractual framework to mitigate the risk of modern slavery.

Modern slavery includes eight forms of serious exploitation: trafficking in persons; slavery; servitude; forced marriage; forced labour; debt bondage; deceptive recruiting for labour services; and the worst forms of child labour.

49.6 million people live in slavery globally

One in four

We use a sustainability-focused investment management organisation to guide our investment decisions by conducting comprehensive reviews, including modern slavery due diligence, which complements our own due diligence and policy requirements.

of the 49.6 million victims of modern slavery are children

The Institute seeks and receives donations from partners and donors around the world to ensure a sustainable approach to funding our operations. The Institute understands its responsibility and accountability for ensuring these donations come from ethical sources.

of forced marriage

Our supply chains The Institute’s approach to contractor due diligence considers the risk of modern slavery based on the category of the product or service, and the country from where the product or service is sourced. Given 92 per cent of our contractors are Australia-based – where the government has an active approach and the prevalence of modern slavery is low – our risk is low. However, we are still aware that modern slavery exists in Australia, therefore an appropriate level of due diligence is consistently applied.

It is evident that modern slavery risk can only be mitigated through a persistent and collaborative approach, and as such it is everyone’s responsibility to address and eliminate this issue. At Telethon Kids we recognise this responsibility and are determined to minimise our footprint in the entrenched global network that is modern slavery.

22 million victims 27.6 million people in forced labour

42 million people

exploited in global supply chains in the private economy

3.9 million people

in forced labour imposed by state authorities

6.3 million people

in forced sexual exploitation Source: Anti-Slavery Australia

If you are interested in accessing more information about the Institute’s approach to mitigating the risk of modern slavery and would like to learn about our future commitments and way forward, read our Modern Slavery Statement: https://bit.ly/ TKImodernslaverystatement

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WA Governor praises Telethon Kids’ Professor for pioneering research His Excellency the Honourable Chris Dawson AC APM and Mrs Darrilyn Dawson, co-Patrons of Telethon Kids Institute, hosted this year’s Governor’s Lecture in the beautiful Ballroom within the grounds of Government House. The Governor welcomed Professor Peter Gething as this year’s keynote speaker to talk about his world-leading research into data-mapping and its impact on children’s health.

Almost 200 people attended the prestigious event, held in November, to hear about how Professor Gething, a former Oxford Professor who now calls Perth home, is applying the same geospatial technology that’s been critical to the global fight against malaria to children’s health issues, here in Perth.

Professor Gething’s team has developed Virtual WA, which explores spatial and community factors such as access to transportation, distance to the closest GP, and how these factors might impact our children’s overall health and wellbeing. This information can help researchers, practitioners and government work together to develop effective policy and practice to help our whole community thrive, as well as identify more vulnerable communities that require support.

Telethon Kids Institute Chair, the Hon Julie Bishop, also recognised Professor Gething’s work throughout the pandemic, when his team’s COVID modelling proved invaluable to decisionmakers.

Telethon Kids Executive Director, Professor Jonathan Carapetis, said the evening provided a significant opportunity for donors and supporters to learn about some of the research happening at Telethon Kids Institute.

“This lecture series has brought the very best researchers from around the world to Perth, for the benefit of supporters, community leaders, and our own researchers,” Professor Carapetis said.

“It was an honour to highlight the incredible work of Professor Peter Gething and his team this year.”

Professor Gething is also the Kerry M Stokes AC Chair in Child Health and a Distinguished Professor in Epidemiology at John Curtin University.

Recently, Professor Gething’s work in tracking and tackling Malaria has been awarded more than $16 million by the Bill & Melinda Gates Foundation. The Malaria Atlas Project (MAP) houses the world’s largest malaria database and is at the forefront of efforts to understand one of the world’s leading causes of disease and child deaths.

To read more about Professor Gething’s work, including the Malaria Atlas Project, visit: https://bit.ly/ProfPeteGething

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Fantastic FUNdraising WA school kids inspired to support child health research

Floreat Park Primary School Floreat Park Primary School student councillors put their thinking caps on when it was time to plan the annual school fundraiser. With research and collaboration a big focus for the students, they wanted to support Telethon Kids Institute and hear from a real-life researcher. After exploring the vast amount of research taking place at Telethon Kids, asthma was selected as the focus due to the large number of students impacted by the illness.

Research Assistant Julia Casella, from the Wal-yan Respiratory Research Centre – a powerhouse partnership between Telethon Kids Institute, Perth Children’s Hospital Foundation and Perth Children’s Hospital, shared her story of becoming a researcher and taught the students about the power of their lungs.

Miss Casella was inspired to one day become a researcher after watching the “Magic School Bus’ as a kid and was fascinated by all the different things going on inside our bodies. She took students from Floreat Park Primary on their own imaginary trip on the Magic School Bus to learn more about how our lungs work, how asthma affects our breathing, and signs to look out for to keep one another safe.

More than 500 kids listened intently as Miss Casella asked the students to perform their very own experiment – seeing what happens to their lungs after running on the spot for 30 seconds. Students shared some enthusiastic observations about what they could feel followed by an opportunity to ask Miss Casella questions, including why kids develop asthma.

Researchers at Telethon Kids are working hard every day to answer that very question while also inspiring the next generation to consider becoming researchers themselves, to assist with life-changing breakthroughs.

Thank you to the Year 6 student councillors of Floreat Park Primary School for organising a wonderful fundraiser, raising more than $600!

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Roleystone Community College Roleystone Community College Year 6 students recently experienced running their own business to learn about supporting local communities and small businesses. Students pitched their business ideas to an internal ‘shark tank’ at the school and five students went on to become the boss of their very own company.

Students researched business ideas before creating, marketing, running, and managing a business.

A common goal among all students was their drive to support others within the community. The ‘kidpreneurs’ decided it would be nice to donate the profits of their businesses and collectively agreed Telethon Kids Institute was the best fit.

The student stalls at the Roleystone Community College Expo night were the best in the ‘biz’, selling every item with lots of happy customers, while also raising an incredible $1,734.65.

We are so grateful to these innovative Year 6 students for contributing to child health research so all kids can lead happy, healthy lives.

Fundraising comes in all shapes and sizes. You could host a beautiful morning tea, challenge yourself by participating in an upcoming community fun run or a classic garage sale to sell your goods... for good! The options are endless, as is your potential to impact our research.

We’re here to support your efforts, answer your questions, and cheer you on as you raise much-needed funds that support our vital work on behalf of kids everywhere.

If you’d like to create your own fundraiser, please contact our friendly fundraising team via giving@telethonkids.org.au or 6319 1333.

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Festive Fun

At Telethon Kids Institute, we have a dedicated and diverse team of more than 1,300 staff, students and researchers. While our main facility is based within the Perth Children’s Hospital, we have sites across several locations throughout Australia. Working with the people and the land on which our research is conducted is integral to the success of our work.

To celebrate the festive season, cut out and colour in these native animals for some end-of-year fun!

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Meet the Development Team One of the great things about being part of the Development Team is getting to know all our researchers, along with their science, and being inspired every day by their personal stories about why they are committed to improving the lives of our kids.

We all have our ‘why’ for doing what we do.

Our Development Team supports the vital work of Telethon Kids Institute across Australia through building a community of supporters who connect with our vision.

There are many aspects to giving at Telethon Kids. From single donations to ongoing corporate and philanthropic partnerships, we value each

and every person and organisation that chooses to support childhood medical research.

Our supporter community is special to us, and we deeply value the relationships that we make.

We love getting to know each of you, sharing our latest updates and introducing you to worldleading researchers and their life-changing work — all made possible by your support.

We are so passionate about what we do and together, with you – we make a difference.

From our family at Telethon Kids Institute to yours, thank you and we wish you all a safe, happy and healthy summer season!

Alecia Benzie Head of Development alecia.benzie@telethonkids.org.au

Daniela Hundzova Corporate Partnerships Officer Daniela.Hundzova@telethonkids.org.au Simmone Sharp Philanthropy Manager, Major Gifts simmone.sharp@telethonkids.org.au Katrina Allen Strategic Partnerships Manager katrina.allen@telethonkids.org.au

Kirren Fullagar Gifts in Wills Officer kirren.fullagar@telethonkids.org.au April Welsh Development Communications Officer april.welsh@telethonkids.org.au

Ben Wood Corporate Partnerships Manager ben.wood@telethonkids.org.au

Astral Mansfield Development Services Manager astral.mansfield@telethonkids.org.au Patrice Maher Major Gifts Officer patrice.maher@telethonkids.org.au

Kari Harrison Development Services Officer kari.harrison@telethonkids.org.au

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CREATING FUTURE GENERATIONS OF

s d i k y h t l a e h y p p ha

Leaving a gift in your Will to Telethon Kids Institute allows our researchers to discover, prevent, and cure childhood illnesses and diseases.

For an obligation-free conversation to learn more about how your gift can create a lasting impact, email giving@telethonkids.org.au or scan the QR code.