Nine-year-old Maliek enjoying The Kids’ 2024 Broome STEM Festival
Cover photo: Charlotte Patterson (second from left) with her mum, Laura West and siblings Joshua and Bella.
Message from our Executive Director
Discoveries that solve the biggest problems for kids and families are what drives our scientists at The Kids Research Institute Australia.
It often takes years of painstaking work in laboratories and analysing complicated sets of data before breakthroughs are realised. But when they are, the impact of that work can be enormous.
Researchers in our Undiagnosed Diseases program laboured for five years to discover the cause of 10-yearold Charlotte Patterson’s debilitating disease, which presented as both severe physical and intellectual disabilities. Charlotte’s story is our feature article in this summer edition of Together.
Thanks to their pursuit of Charlotte’s genetic mystery, many other children with rare and undiagnosed diseases will benefit. The five-year process to identify the cause of Charlotte’s condition can now be streamlined and fast-tracked, reducing diagnoses timeframes to as little as three months.
It is work like this that establishes a pipeline for the breakthroughs of tomorrow. And it is exactly what our new strategic plan – Research Reimagined – aims to achieve across every research theme at the Institute. We launched our ambitious and forward-thinking strategic plan in August at the same time we unveiled our new name and brand, marking a significant milestone in our organisation’s 34-year history.
Now known as The Kids Research Institute Australia, or The Kids for short, we are committed to continuing to support and value the curiosity of scientists pursuing ground-breaking discoveries. But we want these discoveries fostered within an environment that also identifies the major challenges affecting kids, and we want to tackle these systematically, often starting with the endpoint in mind.
This is exactly what the Undiagnosed Diseases team did in their work on Charlotte’s case. In making the breakthrough, they have paved the way for faster diagnoses for the thousands of other children living with rare and undiagnosed diseases in Australia and around the world.
Another example of research that starts with the endpoint in mind is the recent announcement of a WA comprehensive kids cancer centre. The Stan Perron Charitable Foundation announced earlier this year that it would commit an incredible $135.5 million over 10 years to a comprehensive kids cancer centre. This initiative fuels a great collaboration between The Kids and PCH, bringing together our combined expertise and experience with the aim of developing less toxic treatments for kids cancer to improve health outcomes.
This year marks 30 years of support for The Kids from the Stan Perron Charitable Foundation and we are extraordinarily grateful for its ongoing commitment to our research. In this edition of Together, we pay tribute to the late Stan Perron. Mr Perron, who passed away in 2018, has left a lasting legacy through his extraordinary philanthropic support for child health research.
Similarly, work being undertaken by The Kids’ infectious diseases researchers is having stunning success for children in some of the most remote communities in Australia. A landmark skin study undertaken in collaboration with Aboriginal health organisations has halved the rate of skin infections experienced by Aboriginal children in Western Australia’s Kimberley region.
Left untreated, these infections can cause lifethreatening illnesses including rheumatic heart disease, sepsis and kidney disease, all of which disproportionately affect Aboriginal and Torres Strait Islander Australians.
The study findings, published in the prestigious The Lancet Child and Adolescent Health journal, will have positive and far-reaching implications for children in remote communities.
All this research can only happen through the support of our community. No matter the size of your donation to The Kids, every dollar helps our researchers to continue their quest to improve the health and wellbeing of children and families.
Children don’t stop getting sick at Christmas and many have to spend Christmas in hospital. Our scientists don’t stop during these holidays either. Their work to achieve our vision of happy, health kids, continues. And some of our researchers, like cancer researcher Emanuela Ferrari, are still working on Christmas Day, heading into the lab to ensure their research stays on track. Indeed, some of our Undiagnosed Disease program members were also in on Christmas Day contributing to work that led to Charlotte’s diagnosis.
This Christmas, we ask you to think of the kids. If you would like to make a donation, please click on the QR code below or contact our Development Team by emailing giving@thekids.org.au or calling (08) 6319 1333. Your donation will make a huge impact to kids’ lives.
I would like to take this opportunity to wish you and your family a very happy holiday season and a safe and prosperous new year. Thank you for your ongoing support of The Kids.
Director
Think of the kids this Christmas.
To make a donation, scan the QR code or email giving@thekids.org.au Scan
Children don’t stop getting sick and our researchers don’t stop working to help them during the holidays.
Professor Jonathan Carapetis AM Executive
Research breakthrough gives hope to children with rare and undiagnosed diseases
For the first 10 years of her life, Charlotte Patterson’s family had no idea what the future looked like for their daughter and sister.
Doctors had no explanation for the complex range of health challenges Charlotte was born with, including cerebral palsy, seizure disorder, a heart defect, intellectual disability and many other physical abnormalities. She has had 64 surgeries, takes 16 medications daily and requires a feeding tube.
Charlotte was one of thousands of Australian children living with a rare and undiagnosed disease.
Her mother, Laura West, said it had been extremely difficult for the family to not know what caused Charlotte’s condition.
“We had no roadmap, no idea what the future might look like or what her lifespan might be,” Mrs West said. “We have just had this endless and ever-growing list of things that are wrong with Charlotte and no idea what caused any of them.”
Now, thanks to the work of scientists from The Kids Research Institute Australia, the family has an answer.
A complex five-year experiment has cracked the code of Charlotte’s genetic mystery and paved the way for faster and more accurate diagnoses of the most rare and unknown diseases affecting children.
The Kids’ researchers combined laboratory investigations and cuttingedge computational biology to uncover a unique combination of cellular characteristics which pinpointed the cause of Charlotte’s condition.
The researchers then scoured literature and data from around the world to find other patients with similar traits to match the findings to the condition, which they now believe affects less than 10 people globally.
The findings were delivered to Charlotte’s family by doctors from the Undiagnosed Disease Program (UDP) at Perth Children’s Hospital (PCH).
Mum Laura, Charlotte and brother Josh.
The quest to find the cause of Charlotte’s condition started in 2019 and was boosted in 2020 by a $1.164 million donation raised at that year’s Channel Seven Telethon Ball.
The Kids’ Precision Health Program Head and computational biologist, Dr Timo Lassmann, said discovering the characteristics of the variant gene which caused Charlotte’s disease was like finding a needle in a haystack.
“Charlotte’s case was extremely complicated and challenging because of the unique characteristics of the variant,” Dr Lassmann said. “Now, as a result of this work, we will be able to apply the process we used to other cases to diagnose unknown diseases more quickly.”
The Kids’ Translational Genetics Team Head, Dr Vanessa Fear, said the discovery of what caused Charlotte’s condition was astounding. After a complicated process of sequencing the genetic variant in the laboratory, The Kids’ researchers discovered the variant was actually changing the way in which it was making the genes and proteins in the cells function and altering the way the neural cells were developing.
Dr Fear said researchers had created a model of Charlotte’s disease in the laboratory so they could not only determine what was causing her symptoms, but also to investigate how they could modify its pathways to improve outcomes for Charlotte.
“I am just really proud to have been a part of this process where so many people have worked every little step of the way, from collecting blood samples to analysing the cells, to finally providing this extremely valuable data we could feed back to Charlotte’s clinician and her family,”
Dr Fear said.
PCH geneticist and UDP lead Dr Gareth Baynam said families with a child with an undiagnosed disease were forced to live in ‘limbo land’ where their world was filled with uncertainty.
“You don’t know what the right treatment is and you don’t know if you’re receiving the wrong treatment,” Dr Baynam said. “What I hope is that through getting this diagnosis it really does help Charlotte have better health, to have a better medical home and to have more certainty about what the future brings.
63,000 WA children have a rare disease
Half of rare diseases are misdiagnosed
Patients see up to 10 clinicians
Many
More than 300 million worldwide living with a rare disease
Long, involved journeys
specialists, incorrect diagnoses
Conditions can be severe, often disabling and life limiting People experience isolation,stigma and discrimination
Mrs West said receiving a diagnosis for Charlotte was lifechanging for her family. “It gives us hope for the future,” she said. “I think the best bit was learning that this specific gene variant has just occurred out of the blue. It was something that happened and it not hereditary and can’t be passed on.” This was particularly important for Charlotte’s three siblings.
Dr Lassmann stated that the case highlighted the crucial importance of collaboration among computational, clinical and laboratory teams, emphasizing the translational team’s value in tackling the most challenging cases.
The Kids Executive Director, Professor Jonathan Carapetis, said the discovery was groundbreaking and set up a pipeline for similar breakthroughs in rare and undiagnosed diseases.
“The work The Kids’ computational biology team is undertaking is world-leading,” Professor Carapetis said. “They are using cutting-edge technologies and computational science to unlock some of the biggest medical mysteries and help other children with undiagnosed diseases.”
“We can now unequivocally say that Charlotte is going to have a
long life.
She is not going to go backwards, there is a path forward.”
Dr Vanessa Fear and Associate Professor Timo Lassmann.
Thinking of The Kids is central
to our rebrand
Western Australia’s biggest and only medical research institute dedicated to improving kids’ health and wellbeing has rebranded to The Kids Research Institute Australia.
The Kids – as it is now known - reflects the significance and breadth of research being undertaken to deliver even more impactful outcomes, faster.
Drawing on three decades of cutting-edge discoveries, preventative treatment and the quest for cures for the most baffling childhood diseases, The Kids’ purpose is to find solutions to improve the health and happiness of children and young people everywhere.
Executive Director, Professor Jonathan Carapetis, said The Kids would continue to build on the institute’s legacy not just in WA, but across the country and the world.
“From the discovery of the importance of folate during pregnancy to prevent neural tube defects in newborns and unlocking the key to slowing down the progress of childhood leukaemia, to leading the development of national guidelines to assess autism and providing crucial evidence to guide RSV immunisation programs, The Kids has been at the forefront of the most significant advances in child health,” Professor Carapetis said.
The new brand aligns with the launch of its 10-year strategy “Research Reimagined’ that sets out a comprehensive plan for even greater impact.
“This is not something we can or want to do alone, and working alongside community and partners is a key driver of our strategy,” he said.
“Over the next decade and beyond we will focus our research on solving priority problems facing kids’ health across the globe.
“This includes working on a vaccine for Streptococcus A, one of the deadliest pathogens on the planet, developing kids’ cancer treatments that are more effective and less toxic and bringing together international leaders in the field of neuro-disability to identify high-risk children in their first months of life to receive early, evidence-based support.
“Critically, we will continue to have an overarching commitment to address the inequity of the health and
wellbeing of Aboriginal children and families, which remains devastatingly poor across Australia.”
To reflect this commitment, The Kids’ new branding encompasses an Indigenous theme of family, country and culture.
Created in consultation with Aboriginal staff, the design elements portray a story of strength, where healthy kids are influenced by strong healthy families and communities, and their Country.
Patterns in the brand that reflect these themes include the desert, river, ocean and forest. Stars are used to illustrate that Country refers to all parts of Australia.
Professor Carapetis said the Institute’s rebrand placed kids at the forefront of everything it stood for.
“For every member of staff, when we come to work, we think of the kids we are working to help.”
His Excellency, Governor Chris Dawson (left to right), Indy McDonald, 5, Summer Skeen, 11, Arlo Harrington, 8 and Mrs Darrilyn Dawson.
The Kids staff Gillian Woods (left to right), Mara West, Cheryl Bridge, Sarah Cattermole, Associate Professor Glenn Pearson.
Guests at The Kids brand launch in August.
Worrying trends reinforce need for kids health research
Child health experts are concerned by a significant increase in the number of Australian children requiring learning support at school.
Latest figures from the Australian Curriculum, Assessment and Reporting Authority (ACARA) reveal that one in four students, or 24.2 per cent of all primary and high school enrolments, now need learning assistance – up from 22.5 per cent in 2022 and 18 per cent in 2015.
The Kids Research Institute Australia Executive Director, Professor Jonathan Carapetis, said that worryingly, a number of other key indicators of child health and wellbeing remain in decline or are failing to improve.
“These data add further evidence as to why we need to be more proactive in addressing serious issues affecting our nation’s most precious resource, our children,” he said.
“For some time now we have known that the mental and physical health of our children is at risk with increasing rates of anxiety, depression and obesity. Up to half of mental disorders have their onset by age 14, one in five kids still doesn’t finish school, one in six lives below the poverty line and our teenagers are spending 30 per cent of their time while awake on screens.
“As child health researchers we are asking the hard questions to find out why this happening, what we can all do to turn around these figures and ensure that all kids can reach their full potential.”
The ACARA data reveal that last year, of the students requiring educational adjustment due to disability, more than 54 per cent had cognitive disabilities.
A third of students needed learning assistance because they had a social-emotional disability, nearly 10 per cent a physical disability, and 2.7 per cent a sensory disability.
Professor Carapetis said researchers at The Kids, formerly Telethon Kids Institute, would continue to focus on developing new solutions with service providers and governments aimed at optimising children’s development from as early as possible in a child’s life.
“When kids are struggling – when they cannot concentrate, when they cannot see or hear as well as other children, when they’re dealing with a chronic condition or disability, when they cannot move as easily as other children, when they are neurodivergent, when their family don’t have the resources to feed them in the morning, when they’ve experienced trauma, or when they don’t have equitable access to healthcare or other support – it not only affects their ability to learn, but to develop and thrive.”
Generous support helps provide new resources to help teachers better support diverse learners
Teachers in metro, regional and remote areas in Australia will soon have access to new online resources to help them better support diverse learners in their classrooms, thanks to support from the AOJ Woods Foundation.
Being developed by CliniKids — The Kids Research Institute Australia’s first integrated clinical and research service — the flexible, self-paced online resources aim to equip teachers with current neurodiversity-affirming knowledge and best-practice support strategies regardless of where they live or work in Australia.
Andrew Whitehouse, the Angela Wright Bennett Professor of Autism Research and Director of CliniKids at The Kids, is an international leader in developing ways to better support children with disability in schools. He was recently appointed by WA Education Minister, Tony Buti, to lead an expert panel to review the WA School Education Act to identify opportunities to strength the access and inclusion for children with disability.
“We know that there are increasing numbers of children experiencing developmental challenge, and these numbers show that the challenges endure all the way through to the school years,” Professor Whitehouse said.
“There is an urgent need to find new ways to support children, and also to support those who are closest to children – parents and teachers. The importance of research and evidence in this endeavour cannot be underestimated. Evidence provides the path towards our ‘north star’ of ensuring that all children reach their full potential.”
Sarah Pillar, the Research Development Manager at CliniKids, said latest figures suggested every teacher likely had at least five students with additional learning needs in their classroom.
Students with additional learning needs might be neurodivergent, and have received an autism, ADHD or dyslexia diagnosis.
While neurodivergent students could bring a range of strengths into classroom settings, they could also experience challenges, and teachers were often not well supported with research-backed information to help them to meet their neurodivergent students’ support needs, Ms Pillar said.
“Despite the increasing prevalence of both autism and ADHD, teachers have told us that resources to gain a better understanding of neurodiversity, and to build school capacity to support these students are lacking,” Ms Pillar said.
To address this gap, the CliniKids team has spent time working in local schools to deliver professional development workshops to support teachers, education assistants and broader school staff to better understand the needs of neurodiverse students.
“The feedback from our work in schools has been overwhelmingly positive, but we wanted to do more to make evidence-based resources more accessible to lower resourced schools as well as regional and remote schools across Australia,” Ms Pillar said.
“Thanks to support from the AOJ Woods Foundation, we will now be able to develop content for new online learning modules to make the key knowledge teachers need broadly accessible.
“We’re excited for the scope for these online modules to reach teachers across Australia and to positively impact on the educational experience, learning and wellbeing of far more children.
“This project will hopefully afford every neurodivergent child an opportunity to experience greater understanding and inclusion in their everyday classrooms, resulting in happier and healthier children that are supported and celebrated at school.
“We’re so grateful to the Woods family for being an ongoing supporter of CliniKids.”
Joanne Woods said educators and the school community played a vital role in shaping the future for all children.
“By embracing different brains, we create classrooms where every child feels understood, valued, and supported,” Mrs Woods said.
“When students feel they belong, their confidence and mental health improve, creating a ripple effect of positivity and wellbeing throughout the school community.
“We appreciate the hard work and dedication of educators who are making a difference every day by fostering inclusive and supportive spaces for all.”
Professor Jonathan Carapetis.
Professor Andrew Whitehouse.
Dr Gail Alvares, Anthony Woods, Joanne Woods and Oliver Woods.
Major Perron gift dedicated to better childhood cancer outcomes
A record, multi-partner philanthropic investment has been hailed a game-changer for childhood cancer research in Western Australia.
In what is believed to be one of the State’s biggest ever gifts, the Stan Perron Charitable Foundation will contribute $135.5 million over the next decade to transform childhood cancer research and treatment by improving outcomes for kids with cancer and discovering more effective and less toxic treatments.
The Perth Children’s Hospital Foundation will also make a multi-million dollar contribution over five years to the collaboration and The University of Western Australia will add up to $9 million to help improve the lives of kids with cancer.
The financial commitment from the Stan Perron Charitable Foundation, one of WA’s oldest charities, is an incredible contribution to the State and a fitting legacy to its founder, businessman Stan Perron, who passed away in 2018.
The funding will build on the child cancer research already being undertaken at The Kids Research Institute Australia and Perth Children’s Hospital (PCH). It will mean that researchers will have a long-term future, supplemented by the ongoing support of our generous community. It will also mean that no Western Australian child will miss out on the best treatment available.
Professor Nick Gottardo, co-lead at The Kids Cancer Centre and head of the Oncology and Haematology Department at PCH, said in the past 70 years only 50 new drugs had been approved to treat kids’ cancers, whereas for adults 60 cancer drugs were approved every year.
Announcing the game-changing donation (left to right): UWA’s Professor Anna Nowak, Child and Adolescent Health Service Chief Executive Valerie Jovanovic, Health Minister Amber-Jade Sanderson, Tracey Hollington, Angus Hollington, Professor Nick Gottardo, Medical Research Minister Stephen Dawson, Elizabeth Perron, Associate Professor Joost Lesterhuis, The Kids Executive Director Professor Jonathan Carapetis, Perth Children’s Hospital Foundation CEO Carrick Robinson
“Current treatments for kids cancer cause severe and often lifelong side effects including problems with emotions, reproduction, growth, development, hormones, learning, memory problems, heart, lung, digestive system, hearing, vision and most strikingly, can cause secondary cancers,” Professor Gottardo said.
“This amazing donation will give us the chance to build on the worldleading research we are already undertaking and ensure kids in WA can be treated right here in WA.
“It will mean that kids with cancer will have access to the best treatment options without needing to leave the State and kids diagnosed with cancer in the future will benefit from transformative discovery research.
“It will advance our pre-clinical discovery pipeline to significantly improve outcomes for kids yet to be diagnosed with cancer, to discover more effective and less toxic treatments that will be adopted worldwide and to improve the lives of kids impacted by cancer globaly.
“Our vision is for all kids with cancer to survive and thrive.”
The Kids Executive Director Professor Jonathan Carapetis said the initiative was a research model exemplar where researchers, clinicians and families with lived experience had chartered a course for what would be needed in kids’ cancer research and treatment in the next decade.
By 2035 it is the goal for
Every child with cancer to have access to the world’s best cancer treatments in WA, including treatments ‘homegrown’ in our local laboratories.
“This is research reimagined. Nothing about his work is business as usual. It has been borne out of genuine partnerships with kids and families at the heart of the plan.
“This funding is a game-changer for childhood cancer research and treatment in WA. It will bring together ‘Team WA’ – an interdisciplinary team of clinicians and researchers; it will also attract and retain the brightest minds in this field from around the world and facilitate the purchase of the most advanced equipment needed to ensure research breakthroughs,” Professor Carapetis said.
Key local partners also include Sir Charles Gairdner Hospital, Linear Clinical Research, the Harry Perkins Institute of Medical Research and the Cancer Council of Western Australia.
Three decades of support the Perron Way
The careers of more than 100 child health researchers have been supported by the generosity of the Stan Perron Charitable Foundation over the past three decades.
This backing has been instrumental in facilitating major scientific discoveries in ear health, asthma, respiratory syncytial virus (RSV), kids cancer, infectious disease modelling and respiratory health.
“The health and wellbeing of children around Australia and the world is better thanks to the incredible legacy of Stan Perron,” The Kids Research Institute Australia Executive Director, Professor Jonathan Carapetis said.
“We are so proud to this year be recognising and celebrating a 30-year partnership with the Stan Perron Charitable Foundation. Mr Perron has left a remarkable legacy in child health and The Kids is extraordinarily honoured to have been a major beneficiary of his, and his Foundation’s generosity.”
The Stan Perron Charitable Foundation was established in 1978 to support a range of charitable causes especially those related to the health and wellbeing of Western Australian children.
Mr Perron’s passing in 2018 resulted in Elizabeth Perron assuming leadership of the Foundation as its Chair and a significant change in the strategic purpose of the Perron Group.
This involved the Perron Group, which operates independently of the Foundation, effectively being restructured as a permanent endowment to fund the Foundation’s giving in perpetuity.
This has enabled the extension of the work of the Foundation, which last financial year distributed $45 million to more than 300 recipients.
In addition to the funds distributed in FY24, a further $167.84 million has been committed and will be paid over the next one to 10 years.
Aboriginal kids with cancer to receive tailored treatment with a culturally sensitive approach to care.
All kids with cancer to have access to novel, effective treatments with reduced lifelong side effects, resulting in improved outcomes and the best chance of a life free from long-term physical and psychological complications.
To be recognised as world-leading, with collaborative networks across the country and the world.
Professor Nick Gottardo
Stan Perron
Landmark study halves skin infections in remote Kimberley Aboriginal communities
A large-scale Australian skin study has halved the rate of skin infections experienced by Aboriginal children living in remote communities, with regular skin checks key to the stunning result.
Led by The Kids Research Institute Australia and Aboriginal health organisations in close partnership with nine Aboriginal communities in Western Australia’s Kimberley region, the five-year SToP Trial set out to identify the best possible methods to See, Treat and Prevent painful skin sores and scabies.
Left untreated, skin infections can cause lifethreatening illnesses including rheumatic heart disease (RHD), sepsis and kidney disease – all of which disproportionately affect Aboriginal and Torres Strait Islander Australians.
“Skin sores, or impetigo, are a massive problem – our previous research has shown children living in Australia’s remote Aboriginal communities have the highest rates of impetigo in the world,” SToP Trial lead Professor Asha Bowen said.
“These painful and itchy infections are so common they were seen as ‘normal’ and often left untreated, which can lead to life-threatening illnesses.”
Researchers worked closely with community members and local health services – including Kimberley
Aboriginal Medical Services, Nirrumbuk Environmental Health and Services, and the WA Country Health Service-Kimberley – to complete skin check-ups and yarn about the best approaches for local treatment and sharing prevention messages.
Led by Professor Bowen – Head of the Healthy Skin and ARF Prevention team at the Wesfarmers Centre of Vaccines and Infectious Diseases, based at The Kids, Professor at The University of Western Australia and Paediatrician at Perth Children’s Hospital – the team followed 915 children and visited schools in nine communities three times per year over the study period.
“The magnitude of the project was huge,” Professor Bowen said. “It was a tremendous effort by our entire Healthy Skin team - collectively they completed 3,084 skin checks over the four-year period and covered over 45,000 kms travelling to 81 community visits in order to gain a full picture of how skin infections affect kids and their families.”
The findings, published in The Lancet Child & Adolescent Health and eClinicalMedicine, reveal that while the rate of skin infections early in the study period was close to 40 per cent, this had been reduced to 20 per cent – two in every ten children – by the end of the trial.
“Our aim for the SToP Trial was to decrease the burden of skin sores by 50 per cent – an outcome we are proud to have achieved,” Professor Bowen said.
“The results demonstrated that improved detection through skin surveillance in schools played the biggest role in achieving our outcome – having a strong focus on regular skin checks, communicating these results to the school, clinic and families, and really elevating skin health as a priority were the key factors we were able to identify in the SToP Trial.
“Ultimately, I would like to see Aboriginal children living in remote communities having the same rates of skin sores as any other child in Australia, which means getting it down to around one in every 20 children.
“The prevention side of our research highlighted the importance of environmental health and the availability of suitable, well-maintained living conditions, so we really need to advocate for solid investment in healthy housing and regular maintenance in order to achieve this.”
One Arm Point Community Navigator for the SToP Trial, Mayala Bardi Jawi woman Ms Janella Isaac, said using the approach of empowering community members to assist with engaging with families and building their own capacity meant the research project was welcomed with open arms.
“Working with community navigators to assist with the delivery of health messages, bringing the community together at BBQs and having the same researchers return to the same place for each visit made all the difference in building relationships with the families involved,” Ms Isaac said.
“For my own children, participating in the study helped us in a big way –they were really engaged in learning how to prevent skin infections both for themselves and future generations.”
First author Dr Hannah Thomas said the involvement of kids and local communities in the Kimberley had been absolutely pivotal, ensuring everyone worked together towards the goal of healthy skin.
“We really wanted to empower the children to prioritise their own health, so in addition to skin checks and efforts to improve treatment we embedded a number of interactive projects for the kids to get involved in,” Dr Thomas said.
“This included a hip-hop video filmed on the Dampier Peninsula that shared healthy skin messages in the children’s own words, co-designing workshop materials in the classroom, and developing healthy skin story books featuring language, photos and artwork created by the students.
“Together, these resources create a legacy that combines western medicine and traditional cultural knowledge that will help communities maintain healthy skin.”
Professor Asha Bowen.
Professor Asha Bowen (left) and Ms Janella Isaac.
Study finds colostrum gives undernourished babies a fighting chance
A new international study, published in Microbiome, has revealed that the first drops of breast milk are crucial for healthy growth at birth and can help combat chronic undernutrition, which affects 200 million children and causes more than three million deaths annually worldwide.
Led by Professor Valerie Verhasselt, Director of the Larsson-Rosenquist Foundation Centre of Immunology and Breastfeeding (CIBF) at The University of Western Australia’s Medical School and The Kids Research Institute Australia, the research highlights the crucial impact of diet at birth on healthy growth, independent of the gut microbiota.
“Chronic undernutrition is a severe health burden that predominantly affects children in low and middleincome countries, causing growth failure, immune dysfunction and neurodevelopmental deficits,” Professor Verhasselt said.
“Most traditional prevention strategies have focused on complementary feeding; the period when infants transition from exclusive breastfeeding to receiving additional foods and liquids, missing the critical early stages of growth.
“We investigated whether dietary intervention at birth could prevent chronic malnutrition by influencing the infant microbiota, focusing on colostrum – the unique yellow breast milk produced in very low amount during the first two to three days and ideally received within an hour of birth.
“Our hypothesis centred on colostrum’s high levels of bioactive factors, including growth factors and microbiota-shaping compounds, which are critical at the time when the gut is colonised with bacteria, compared to mature milk and especially pre-lacteal feeds like formula.”
The researchers found that feeding mature milk instead of colostrum at birth leads to growth failure, indicating colostrum's crucial role in preventing this condition and the importance of developmentally appropriate interventions.
“We discovered that while colostrum significantly impacts gut microbiota development, its benefits for
growth don’t depend on the microbiota,” Professor Verhasselt said.
“This finding was unexpected, given the importance of the microbiota in regulating adult physiology and it highlighted that early in development, when the microbiota is not stable, appropriate nutrition may be a safer way to control growth.
“Additionally, colostrum deprivation results in growth hormone resistance and subsequent growth failure, independent of common causes like undernutrition and infection, again showing the strong impact of the choice of diet at birth.”
Professor Verhasselt said despite World Health Organisation (WHO) guidelines recommending breastfeeding within the first hour, along with exclusive breastfeeding, at least one in three newborns worldwide don’t receive optimal colostrum feeding, with misconceptions about its nutritional adequacy contributing to this issue.
“This study provides robust scientific evidence of the long-term benefits of colostrum in preventing growth failure and adds to the recent findings of the Centre on the role of colostrum in preventing another major child health burden, helminth infection, strongly advocating for investing in the implementation of WHO guidelines,” she said.
The preclinical findings of long-term benefits from the first drops of colostrum pave the way for investigating the effects of colostrum in human birth cohorts and should hopefully lead to more evidence for implementing WHO guidelines on early breastfeeding practices and developing ageappropriate nutritional interventions for health promotion, Professor Verhasselt said.
New trial aims to reduce peanut allergies in children
Mothers eating a diet rich in peanuts while breastfeeding might be helping to reduce their baby’s risk of developing a peanut allergy – that’s the hypothesis of a new clinical trial that has been granted $2.29 million in funding by the National Health and Medical Research Council (NHMRC).
Led by The Kids Research Institute Australia Head of the Early Life & Life-Course Health Program, Associate Professor Debbie Palmer, 4,000 pregnant women across Perth and Melbourne will be recruited over the course of the five-year trial.
Half will be allocated a diet high in peanuts while breastfeeding, while others will consume a diet low in peanuts.
The peanut trial will be led by The Kids Research Institute Australia in collaboration with organisations including the Centre for Human Lactation Research and Translation at The University of Western Australia (of which Associate Professor Palmer is also Co-Director), Murdoch Children’s Research Institute (MCRI), National Allergy Centre of Excellence (NACE), and Centre for Food Allergy Research (CFAR).
“We know that when a breastfeeding mother eats peanuts, we can detect peanut proteins in her breast milk. This research will aim to determine whether breastfeeding mothers eating more or less peanuts will help to prevent their babies developing peanut allergy,” Associate Professor Palmer said.
“The results from this research project will inform national maternal dietary guidelines for peanut allergy prevention.
“We need new studies and trials to determine how we can prevent food allergies in children, because at the moment, one in 10 young Australian children have a food allergy, and with peanut allergies, one in 30 –which is approximately one child in every school class with a peanut allergy.
“Reducing the prevalence of peanut allergy in Australia will reduce rising rates of food anaphylaxis, emergency department visits and hospital admissions.”
The Kids Research Institute Australia Executive Director Jonathan Carapetis welcomed the funding and said Associate Professor Palmer’s work had the potential to make a huge impact on reducing the incidence of peanut allergies in children.
“This is globally significant research which has the potential to impact many lives and change dietary recommendations around peanut allergy prevention,” Professor Carapetis said.
The trial is one of 25 across the nation to share in more than $77 million in funding under the latest round of the NHMRC’s Clinical Trials and Cohort Studies grant scheme. Projects funded under this scheme are designed to establish a solid evidence base required for better clinical care and outcomes, as well as improved health and wellbeing services, practices and policies.
Associate Professor Palmer is also Co-chair of the NACE Food Allergy Stream Advisory Group, and a Chief Investigator of the CFAR. The grant will be administered by The University of Western Australia.
Interested mothers-to-be should email the trial at NutsForBabies@thekids.org.au.
Sundowner event to thank Illuminate Award supporters
Supporters of The Kids Research Institute Australia’s Illuminate Awards were shown the power of their support at a sundowner in September.
Held at FORM Gallery, Claremont, supporters were able to hear from several of our trailblazing Illuminate Award-winning researchers, who each shared an update on their research projects, which are driving lifechanging and life-saving discoveries.
Attendees also heard from Joanne Beedie from Helping Little Hands, who described the genuine connection and growth of the relationship she has built with the researchers she has supported with an Illuminate Award.
The annual Awards are designed to support the next generation of researchers, however, it’s also about the opportunity to connect like-minded individuals who are passionate about happy, healthy kids.
The Kids is incredibly grateful to community members who supported the Illuminate Awards in 2024, including those who have generously supported a named Award.
Pioneering WA anaesthetist wins Prime Minister’s prize
Trailblazing paediatric anaesthetist and researcher Professor Britta Regli-von Ungern-Sternberg has been awarded a prestigious Prime Minister’s Prize for Science for globally influential research that has made surgery and recovery safer for babies and children.
Professor Regli-von Ungern-Sternberg received the Frank Fenner Prize for Life Sciences at the 2024 Prime Minister’s Prizes for Science, held in Canberra in October, in recognition of her achievements in reducing the risks associated with paediatric anaesthesia.
Professor Regli-von Ungern-Sternberg is co-lead of the Perioperative Care Program and head of the Perioperative Medicine Team at The Kids, is a consultant anaesthetist at Perth Children’s Hospital, and Foundation Chair of Paediatric Anaesthesia and Director of the Institute for Paediatric Perioperative Excellence at UWA.
around breathing complications before and after surgery – have been incorporated into international guidelines and clinical practice, changing the way anaesthesia for children is performed worldwide.
In accepting the prize, Professor Regli-von UngernSternberg said the award was not just for her, but her whole team – clinical and non-clinical.
“The reason we can translate our work so easily into clinical practice is because we work together as a group, including with our patients and their families,” she said.
Next year’s Illuminate Awards will be held on Thursday 20 February, where our brilliant early to mid-career researchers will pitch their projects that require support.
With her team, she has the most active paediatric anaesthesia research program in Australia. Her research findings – including
“Our research is not just about children and for children, but is co-designed with children and by children and families.”
Deputy Director, Professor Catherine Elliott, said Professor Regli-von Ungern-Sternberg was a shining example of the potential of research to improve the health and wellbeing of children and families.
Dr Jane Choi (left to right), Dr Katherine Landwehr, Dr Ben Wylie, Professor Catherine Elliott, Dr Jacinta Saldaris and Dr Vincent Mancini.
Rob and Wendy Endebrock-Brown with Simmone Sharp.
Dr Joanne Beedie and Dr Jane Choi.
Professor Britta Regli-von Ungern-Sternberg. Photo supplied: The Department of Industry, Science and Resources
Academy elections recognise important child health research contributions
Three research leaders from The Kids Research Institute Australia have been elected to prestigious national health and science academies.
Trailblazing Aboriginal doctor and health researcher Professor Alex Brown has been made a Fellow of the Australian Academy of Technological Sciences and Engineering in recognition of his leadership in ensuring Indigenous peoples are at the forefront of genomics efforts nationally and internationally.
Professor Brown, a Yuin man with family connections on the far south coast of New South Wales, is Professor of Indigenous Genomics at The Kids and Director of the National Centre for Indigenous Genomics at The Australian National University.
The first Indigenous scientist appointed to the board of CSIRO, Professor Brown has made significant and wide-ranging contributions to national policy in Indigenous health and is a pioneer in the field of Indigenous Genomics, using the power of genomic and data sciences to improve health outcomes for Indigenous people, families and communities.
He provides scientific and operational leadership within the Australian Alliance for Indigenous Genomics (ALIGN), a national network that aims to deliver equity and benefit to Indigenous Australians through genomics.
Professor Asha Bowen OAM - Head of the Healthy Skin and ARF Prevention team at The Kids, a paediatrician at Perth Children’s Hospital, and a Professor at The University of Western Australia - has been elected a Fellow of the Australian Academy of Health and Medical Sciences.
Professor Bowen was recognised for the wealth of new knowledge she has generated to improve skin health for Aboriginal children living in remote communities.
Her research methodologies, co-designed by Aboriginal researchers and community members, have been crucial in reducing the impact of painful skin infections and potentially life-threatening illnesses such as sepsis, rheumatic heart disease and kidney disease.
Professor Bowen was also recently awarded a Medal of the Order of Australia (OAM) in the King’s Birthday Honours List for her service to medicine in the field of clinical diseases.
Professor Chris Blyth, who is Head of the Wesfarmers Centre of Vaccines and Infectious Diseases at The Kids, was also made a Fellow of the Australian Academy of Health and Medical Sciences.
A paediatrician at Perth Children’s Hospital and Professor of Paediatric Infectious Diseases at The University of Western Australia, Professor Blyth was elected for his substantial contributions to health –informing international immunisation and infection prevention policy and practice.
His research and advocacy have driven changes to immunisation programs nationally and globally, particularly for influenza and pneumococcus. Professor Blyth’s more recent work has guided the launch of Australia’s first ever respiratory syncytial virus (RSV) immunisation program for young babies, resulting in a significant reduction in RSV-related hospital admissions.
Childhood leukaemia scientist named Cancer Researcher of the Year
Associate Professor Rishi Kotecha, Co-Head of Leukaemia Translational Research at The Kids Research Institute Australia Cancer Centre and Consultant Paediatric Oncologist at Perth Children’s Hospital, has been named Cancer Council WA’s 2024 Cancer Researcher of the Year.
The prestigious award recognises Associate Professor Kotecha’s contributions to advancing leukaemia research and improving access to clinical trials and cutting-edge therapies for infants and children in Western Australia.
In particular, his research has made a significant impact on improving the outcomes for infants diagnosed with Acute Lymphoblastic Leukaemia (ALL).
“Outcomes for infants under one year of age with Acute Lymphoblastic Leukaemia have remained stagnant over decades, with five-year event-free survival rates less than 40 per cent,” Associate Professor Kotecha said.
“My vision has been to improve this grim outcome through the establishment of a research program to identify novel therapies and develop innovative models to rigorously assess promising candidates for translation into clinical trials.
“I would like to thank Cancer Council WA for the incredible honour of being recognised as their 2024 Cancer Researcher of the Year.”
Associate Professor Kotecha’s dedication to advancing both scientific understanding and clinical applications is exemplified by a recent pilot clinical study, which drastically improved participant outcomes using immunotherapy in addition to chemotherapy.
“A small pilot clinical study we conducted recently with the addition of an immunotherapy called blinatumomab improved survival outcomes by 30 per cent – findings which indicate we are on the cusp of changing the paradigm for infants with ALL,” he said. “We will now investigate this approach further in larger international trials.”
Professor Catherine Elliott, Deputy Executive Director and Director of Research at The Kids Research Institute Australia, acknowledged the profound impact Associate Professor Kotecha’s work has had on children and their families through the integration of clinical research into treatment.
“Rishi’s work exemplifies the transformative power of research, driven by his sustained collaboration with both local and international partners,” Professor Elliott said.
“This approach has not only advanced our understanding of leukaemia but has led to life changing outcomes for children and this award is a testament to the significant progress he has made.
“Rishi’s achievements go beyond the laboratory and clinic. His mentorship of young researchers and collaboration with international teams are helping to build a brighter future for paediatric cancer research globally. We are fortunate to have such a visionary leader here at The Kids.”
As part of this honour, Associate Professor Kotecha – who is also an Associate Professor at Curtin University, The University of Western Australia and Monash University –will receive $20,000 towards his research program, further supporting his team’s innovative work.
Associate Professor Rishi Kotecha.
Professors Alex Brown, Asha Bowen and Chris Blyth.
Respiratory health researcher wins Premier’s Science Award
Research into reducing the disease burden of chronic respiratory disease in Aboriginal children has earned The Kids Research Institute Australia’s Dr Pam Laird a gong in the 2024 Premier’s Science Awards.
Dr Laird, a senior clinician research fellow at The Kids and a paediatric respiratory physiotherapist at Perth Children’s Hospital (PCH), was named joint winner of the Early Career Scientist of the Year at the Awards, held in August.
Through her work within the Wal-yan Respiratory Research Centre – a powerhouse partnership between The Kids, PCH and the Perth Children’s Hospital Foundation – Dr Laird has provided worldfirst data on the prevalence of the life-shortening ‘orphan disease’ of bronchiectasis and its precursor, chronic wet cough, both of which disproportionately affect Aboriginal children.
Working closely with Aboriginal medical services, leaders and communities, Dr Laird along with her team, have contributed to national guidelines and created highly accessible resources that, together with her research, have already helped save more than 1000 little lungs.
The Kids Executive Director, Professor Jonathan Carapetis, said Dr Laird, pictured below, had worked tirelessly to increase awareness of chronic wet cough and bronchiectasis, using a combination of rigorous
science, collaboration and creative approaches to health promotion.
“Dr Laird has demonstrated enormous dedication to addressing the significant gaps in health service and health outcomes for Aboriginal children in regional and remote Western Australia, where barriers to access are serious,” Dr Carapetis said.
“Her efforts have dramatically improved awareness and health-seeking for these two conditions in Aboriginal communities and have resulted in a 900 per cent increase in appropriate management by GPs.”
Dr Laird was named joint winner alongside Dr Neil Robinson from The University of Western Australia, who was recognised for his innovative work on nextgeneration energy approaches.
Congratulations also to Winthrop Professor Fiona Wood AM, pictured above, who was inducted into the WA Science Hall of Fame in recognition of her groundbreaking and globally acclaimed contributions to burns research and treatment.
In addition to roles with PCH, Fiona Stanley Hospital and The University of Western Australia, Professor Wood leads the Paediatric Burn Team and is Co-Head of the Perioperative Care Research Program at The Kids.
Professor Carapetis also congratulated The Kids Research Institute Australia’s five other finalists in the 2024 Premier’s Science Awards awards.
“We are enormously proud of all of our finalists, whose exceptional work is contributing in diverse and meaningful ways to the health and wellbeing of children throughout Western Australia and beyond,” Professor Carapetis said.
Louis Landau Chair in Child Health Research at The Kids and UWA Professor Aleksandra Filipovska, who was a finalist for Scientist of the Year in recognition of her pioneering work in mitochondrial disease and synthetic biology.
PhD student Stephanie Enkel, who was a finalist for Student Scientist of the Year for her research focused on understanding and finding acceptable and effective ways to prevent the spread of Strep A in Aboriginal communities.
PhD student Tamara Veselinovic, also a finalist for Student Scientist of the Year for her highly impactful program of research to improve Aboriginal ear health.
Noongar woman and UWA anatomy and human biology student Jaida Penny, a finalist for Aboriginal STEM Student of the Year in recognition of her work with the Early Neurodevelopmental and Mental Health team at The Kids Research Institute Australia.
The inaugural The Kids Research Institute Australia Broome Festival of STEM, run as part of the Institute’s education and outreach program, which was a finalist for Science Engagement Initiative of the Year.
Accessorising with impact
Baking with love
May the funds be with you
In a galaxy not so far, far away, the force was strong as members of the Perth JAWAS supporter community assembled at Wesley College for the annual Jawathon event. Armed with light sabers, game boards, and a shared passion, they took on the dark side by raising more than $8,000 for The Kids Research Institute Australia Cancer Centre.
The event was an intergalactic celebration of Star Wars-themed fun, strategy, and camaraderie, where the galaxy’s best tabletop warriors faced off in a day of thrilling competition and epic battles. Jawathon isn’t just about gameplay—it’s about community, creativity, and giving back.
Players engaged in cooperative missions, devised strategies worthy of Jedi Masters, and channelled their inner heroes (or villains) to support a cause close to their hearts.
With 100 per cent of ticket sales and donations going directly to support world-leading kids’ cancer research, Jawathon has once again proven that the force of generosity is strong within our community.
Pirates giving away treasure for research
The shores of Albany rang out with the sounds of shanties and cheers at the 2024 Albany International Folk 'n' Shanty Festival.
But it wasn’t just sea shanties and tall tales being shared—this year’s festival brought together the most spirited (and competitive) crews from across the Southwest region for an epic Pirate Tug-O-War, all to raise money for The Kids Research Institute Australia Child Disability Team.
Local teams faced off in a fierce battle of strength and strategy, pulling rope with all the might they could muster. But the real treasure wasn’t victory—it was smashing their fundraising goal, raising over $2,300.
Leading the charge was none other than Captain of Research, Professor Jenny Downs, Head of the Development and Disability team at The Kids. Professor Downs travelled to Albany to share ongoing work to improve the lives of children with disabilities and their families.
Congratulations to everyone who participated and donated.
A big thank you to Ranya, who, after receiving exceptional care at Perth Children’s Hospital, felt inspired to give back to the community that supported her.
Motivated by her experience, she dedicated herself to making a difference in the lives of other children in need.
Through her creativity, Ranya crafted (and sold!) an entire collection of jewellery, from children's rings to beautiful drop earrings, raising an impressive $83.10 for The Kids Research Institute Australia.
You’re a star, Ranya!
Fuelling vital research
Local community fundraising champion Puneet is the proud owner of Silver Sponge Car Wash, located on the ground floor of the car park at Perth Children’s Hospital.
Every quarter, Puneet hosts charity car washes to raise money for child health research. With each soap bubble and squeegee swipe, customers at Silver Sponge leave with a sparkling clean car while contributing to vital research efforts supporting children's health.
Since the start of the year, Puneet has raised over $4,000 for The Kids Research Institute Australia, Perth Children's Hospital Foundation, and the Charlies Foundation for Research.
Thanks so much for your support, Puneet!
A dedicated team of osteosarcoma researchers from Brisbane came together for a cause close to their hearts.
With ovens firing up and flour flying, they organised a bake sale to raise funds for The Kids Research Institute Australia Kids Cancer Centre, supporting Sarcoma & Bone Cancer Awareness Month. From rich chocolate brownies to delightful cupcakes, the team’s hard work paid off, raising an impressive $1,003.30 to help fight childhood cancer.
It doesn’t get much better than researchers supporting researchers, fighting for the same goal regardless of where we are working around the country—thanks Briony Claxton, Luke Hipwood, Jacqui McGovern, and the team at McGovern Lab!
Grilling for good
When Nathan’s son Nikolai was diagnosed in 2021 with medulloblastoma, his life turned upside down. But thanks to the work of Dr Nick Gottardo and his dedicated team, his son received the treatment and care he needed.
Grateful for the support and determined to give back, Nathan decided to take action in the best way he knew how—by firing up the barbecue at work to raise money for brain tumour research.
With tongs in hand, and sausages sizzling on the grill, his colleagues lined up to show their support to raise over $1,100 to contribute to the research that made his son’s treatment possible.
Thank you, Nathan for your fundraising support. But a bigger thank you to young Nikolai who donated his tumour to further help research!
STEM-sational hands on learning for National Science Week
What happens when you mix six brilliant researchers, a bucket of slime, and a lot of curiosity? You get a STEM-sational experience like no other in the Kimberley.
Over two days, the Broome Festival of STEM welcomed kids and their families to dive into hands-on science experiments leading up to National Science Week. Many of these activities were inspired by the groundbreaking research at The Kids Research Institute Australia, including studies on ear, lung, and skin health.
The festival attracted more than 600 children from 12 schools, some travelling more than 200 km to attend, alongside another 600 community members for the afternoon sessions.
STEM activities from local organisations and event partners showcased diverse careers available to students eager to explore opportunities in science and technology.
The Kids Deputy Executive Director, Professor Catherine Elliott, said the festival allowed The Kids to take science to regional WA and inspire young people to consider careers in the field.
“While 36 per cent of Western Australians hold a bachelor’s degree, only 5.2 per cent of the Indigenous population does,” Professor Elliott said.
“By inspiring the community and showcasing career paths in medical research and other sciences, we can hopefully increase the number of remote and Indigenous students studying and working in science.”
This year, The Kids partnered with several local organisations to deliver the festival, including sponsors Inspiring Western Australia, IGO Ltd, CFC Group Foundation, and the Australian Government.
(left to right) Eden and Asha, both 8.
Otis, 8.
(left to right) Eden, 8 and Greta, 7.
(left to right) Evelyn and Aurora, both 7.
We think of the fingers, we think of the toes
We think of the eyes, we think of the nose
We think of the laughter, we think of the tears
We think of the tummies, we think of the ears
We think of the breathing, we think of the air
We think of equity, we think “What is fair?”
We think of the mind, we think of the brain
We think of the suffering, we think of the pain
We think of immunity, we think of the cure
We think of the newborns, we think premature
We think of the therapies, we think of the genes
We think of the future, we think of the teens
We think of the progress, we think of the scope
We think of the parents, we think of the hope.
We think of the kids. Every little detail. Anything that might harm them and everything that could help. That thinking leaves the lab and changes the world. It becomes treatments, medicines, policies and programs for happier, healthier kids everywhere.
