Childhood dementia is a devastating condition caused by more than 145 rare genetic disorders, affecting 1 in every 2,900 births.

For children and their families, the impact is profound. As the disease progresses, children lose the skills they’ve worked so hard to develop; walking, talking, eating, and face a rapid decline. With no effective treatments, half of these children will not live to see their 10th birthday, and 70% will not reach adulthood.

But there is hope on the horizon.

A promising drug, N-acetyl-L-leucine (NAL), has already been approved in the United States for one form of childhood dementia, Niemann-Pick disease type C. It is also being trialed for other conditions, and early laboratory research here in Australia suggests that NAL could benefit other forms of childhood dementia that currently have no approved treatments. These include Sanfilippo syndrome, which robs children of their abilities and often leads to death in their teenage years, and GM1 gangliosidosis, an even more aggressive condition where some children diagnosed in infancy may not survive beyond their second birthday.

For families, these diagnoses are heartbreaking, and the lack of treatment options compounds their despair. That’s why the WCH Foundation is proud to support Professor Kim Hemsley’s groundbreaking research to evaluate NAL as a potential treatment for these devastating diseases.

This work will also lay the groundwork for clinical trials, bringing us closer to life-changing therapies for these devastating conditions.

“Wins are few and far between in medical research, and for us in this field, it’s personal. We know these families, and we care about these families. So to realise that you have the funding to potentially make a difference, that’s a very good day.” – Professor Kim Hemsley

Through this vital research, Prof. Hemsley and her team are working to transform the future for children living with childhood dementia. By building on promising laboratory findings, this project has the potential to bring life-changing treatments within reach for children and families affected by this devastating disease.

Find out more about the research we support, here.

Every year, one in seven babies are born with seizures, developmental delays, or the risk of early death due to genetic changes that disrupt brain development.

Despite advances in identifying the genes involved, most of these children face a lifetime without effective treatments, leaving families with heartbreak and uncertainty.

A breakthrough technology called antisense oligonucleotides (ASOs) is offering new hope. These genetic therapies, already proven safe and effective in other diseases, have the potential to transform outcomes for children with rare and devastating brain disorders. By targeting the root cause of these conditions at the genetic level, ASOs could provide treatments where none currently exist.

At present, children with conditions like PCDH19 clustering epilepsy, a severe form of epilepsy that primarily affects girls, and TIMMDC1 neurodegenerative disorder, a rare and life-limiting disease, have few, if any, treatment options. Families are left with no therapies that can truly change their child’s future, compounding the distress of these diagnoses.

The WCH Foundation is proud to support Professors Jozef Gecz and Paul Thomas, along with their multidisciplinary team, in their groundbreaking research to develop ASO therapies for these conditions.

Their work will test new ASO therapies in models that reflect how these diseases affect children, identify safe and effective doses to give children the best possible chance of benefit, and build a treatment pipeline that could be applied to many other rare childhood brain disorders in the future. This research represents a critical step forward in the fight against rare genetic brain disorders, offering families the possibility of treatments that were once unimaginable.

“The donors who make this possible are just phenomenal. I’m eternally grateful to everyone who donates to health and medical research, because in one way or the other, it comes back to all of us.” – Professor Jozef Gecz

Find out more about the research we support, here.

Helping infants feel safe, supported, and understood is one of the most powerful ways parents can nurture their child’s mental health and set the stage for positive social and emotional development.

Yet, for many new parents, the transition to parenthood is filled with the challenges of sleepless nights, soothing a crying baby, and building a strong parent–infant bond. Learning how to navigate these challenges before birth can make a world of difference, but few parents are given this opportunity.

To address this gap, Dr Alyssa Sawyer and her team at the University of Adelaide, SA Medical Imaging (SAMI), and the Women’s and Children’s Health Network (WCHN) developed an attachment-focused intervention. A pilot trial showed that parents facing social and emotional adversity improved their ability to bond with their baby, felt more confident as parents, and gained valuable knowledge about safe infant care. Importantly, parents who participated in the trial asked for one key change: to make this support available to all new parents, not just those at risk.

The WCH Foundation is proud to support the development of this program as a universal intervention, ensuring every family can benefit. The research team will work with parents and clinicians to adapt the program for delivery alongside routine care.

“What we’re hoping we’ll achieve is designing this intervention in a way that can support all parents who come through the hospital to have support for psychological and attachment relational health supported around their routine care across the antenatal and postnatal period.” – Dr Alyssa Sawyer

The program combines innovative approaches to support parents before and after birth, including attachment-focused ultrasounds at the 20-week scan to help parents connect with their baby, antenatal virtual home visits during pregnancy to help parents reflect on their baby’s experiences, and postnatal virtual home visits to provide guidance on bonding, managing crying and sleep, and supporting emotional development.

If successful, this project could strengthen parent–infant bonds, build parents’ confidence, promote infant mental health, and ensure universal access to early support, giving every baby the best possible start in life.

Find out more about the research we support, here.

Borderline Personality Disorder (BPD) is a serious mental health condition that makes managing emotions incredibly challenging. For mothers with BPD, who often carry their own histories of trauma, this can make it harder to respond to their baby’s needs and build the secure attachment every child relies on for healthy development.

When this bond is disrupted, children face a greater risk of developmental, emotional, and mental health challenges later in life. For mothers, the experience can be overwhelming, often leading to feelings of guilt and failure that make parenting even more difficult.

The Mother-Infant Dialectical Behaviour Therapy (MI-DBT) program, developed by the Women’s and Children’s Health Network (WCHN), is changing lives. This 24-session group program teaches emotional regulation and parenting skills to help mothers strengthen their bond with their babies. Mothers who participate often show incredible determination to give their child the best start in life, and the program has been highly successful in improving mother-infant relationships.

However, demand for MI-DBT far exceeds availability. Families face long waits for a place, and for those in rural or remote areas, the program is often out of reach entirely.

The WCH Foundation is proud to support A/Prof Anne Sved Williams and her team (Dr Rebecca Hill, pictured) in developing a telehealth version of MI-DBT, making it accessible to families no matter where they live.

“The benefit is in the relief of both their distress but also changing the trajectories for those kids so they might go on to have better futures and in turn, not repeat that intergenerational transmission.” – Dr Rebecca Hill

This innovative project will expand access to MI-DBT for mothers in rural and remote communities, reduce wait times for families eager to get help, and train more clinicians to ensure the program can grow and be delivered consistently nationwide. By breaking down barriers to care, this project has the potential to transform the lives of mothers and their children, building stronger, healthier families.

Find out more about the research we support, here.

At just eight years old, Divyank is a superhero fan with a big love his dog, Ruby.

In many ways, he’s just like other children his age. However, Divyank lives with a very rare genetic condition called Crouzon syndrome. Divyank has a severe case of craniosynostosis, a condition that causes the bones of the skull to fuse too early, affecting the development of his skull, eyes, nose, teeth, and spine. Because of this, Divyank requires ongoing specialist care and has already undergone dozens of surgeries in his short life.

For Divyank’s mum, Sabina, finding the right care was everything.

“We moved from Canberra to Adelaide because of the incredible Craniofacial and Neurosurgery specialists that the Women’s and Children’s Hospital have” she explains. We’ve been to many hospitals around Australia and the WCH is our favourite. The staff are warm, friendly and they truly hear us.”

Divyank is under the care of multiple teams at the Hospital, including ENT, Gastroenterology, Neurology, Orthopaedics and Speech Pathology. One of his many operations, including a tracheostomy, which requires frequent suction, tape and tube replacement. 

“Having a child with significant healthcare needs is hard,” Sabina shares. “Divyank needs suction throughout the night, so I rarely sleep for long stretches. But we’ve learned to manage, and we just do what’s needed to keep him safe and comfortable.”

The family works together to navigate the challenges. “It has been extremely tough at times,” says Sabina. “I am his full-time carer, and Sanjiv (his dad) often adjusts his work so he can support us with the many appointments. It hasn’t always been easy, but together we do our best to stay strong for Divyank.”  During hospital stays, Sabina says it’s often the small comforts that lift Divyank’s spirits and aid his recovery.

“Sometimes a nurse or therapist will find a special toy that they know Divyank likes. And the play spaces and children’s musical activities in the Hospital really help lift his spirits.”

And what does Divyank look forward to most when he goes home? “Treat-food Saturdays!” he says with a smile. As he is mostly liquid-fed, these special evenings at home enjoying his favourite meal (McDonald’s) are a treasured family ritual.

Despite the immense challenges they face, the family finds joy in their time together. “When we have Divyank at home with us, I forget the hardship and just feel happy and blessed to have him with us.”

The WCH Foundation is supporting innovative research offering new hope for children like Divyank. Led by Professor Peter Anderson, this work could delay or even eliminate the need for invasive surgery for infants with craniosynostosis, reducing the trauma and challenges faced by these children and their families. Read more on Professor Anderson’s research here.

What began as a three-year pilot funded by the Women’s & Children’s Hospital (WCH) Foundation has now secured ongoing support from the South Australian Government, following the program’s remarkable success.

The Cocoon Program, established in 2023 through funding from the WCH Foundation, provides a dedicated clinic for babies under 12 months. More than just general healthcare, Cocoon offers wraparound support that meets the emotional, physical, and mental health needs of infants during their crucial first year. By bringing together multiple aspects of care in one place, the program streamlines treatment and ensures babies receive the support they need, when they need it most. 

From inception to April 2025, the Cocoon Program has supported 132 infants, with families describing the service as ‘life-changing.’ The program was also recently honoured with major accolades, including the Outstanding Service Award at the 2025 South Australian Child Protection and Family Support Awards, and the Out of Hospital Strategies and Care Award at the 2025 WCHN Excellence Awards. 

A program made possible through generosity

Cocoon’s success was only possible thanks to the generosity of its early supporters. 

Hospitals United for Sick Kids played a crucial role in launching the program, raising initial funds through community fundraising in partnership with Coles. 

Peter Kittle Toyota embodied the spirit of a community-minded business, providing significant support for Cocoon until it was adopted by SA Health. 

The WCH Foundation is proud to partner with companies like these, bringing together innovative clinicians and visionary philanthropists to create the greatest impact for children in our community. 

To learn more about the Cocoon Program, please visit here.

The Women’s & Children’s Hospital Foundation is proud to announce its 2025 research grant recipients, leading a diverse array of groundbreaking projects aimed at improving health outcomes for children and families.

Almost $3 million has been committed to these projects over the coming years, supporting vital research into mental health and rare diseases:

• Associate Professor Anne Sved Williams and her team will develop and evaluate telehealth delivery of a program for mothers with Borderline Personality Disorder, enabling them to access mental health support from home, no matter where they live. 

• Dr Alyssa Sawyer and her team will evaluate an attachment-informed perinatal care program designed to strengthen parent–infant bonds, build parental confidence, and promote lifelong wellbeing. 

• Professor Michael Stark and his team will trial late amino acid administration in infants requiring urgent surgery for serious and rare abdominal defects through the DELA3Y Trial, to improve recovery outcomes for these vulnerable babies. 

• Professor Jozef Gecz and his team will develop oligonucleotide therapies for two rare disorders causing epilepsy. This groundbreaking research could not only provide real treatment options for these rare disorders but also open the door to transformative therapies for many others. 

• Professor Kim Hemsley and her team will conduct pre-clinical evaluation of a potential drug treatment for childhood dementia, offering a beacon of hope for children and families affected by this devastating condition.  

• Dr Karissa Barthelson and her team will use zebrafish models to investigate skeletal phenotypes in Morquio syndrome, to uncover new insights into the condition, paving the way for improved treatments. 

These projects aim to create transformational change in healthcare for families across South Australia and beyond.

Established in 2006 by Matthew Scriver’s parents in memory of their beloved son, the Matthew Scriver Paediatric Intensive Care Unit (PICU) Nurses Scholarship has become a beacon of hope and support within the Women’s and Children’s Hospital (WCH) and the broader Women’s and Children’s Health Network (WCHN). Built on compassion and a sense of community, this scholarship empowers nurses to develop and deliver projects that place holistic and psychosocial care at the heart of the PICU experience, especially for long-stay patients and their families.

This year, we are proud to announce that the scholarship has been awarded to Alyssia Baker, a committed nurse whose family shares a legacy of giving, with her grandparents being proud supporters of the WCH Foundation. Alyssia’s project, titled “Retrospective Review of Neuroprotective Management in Paediatric Severe Traumatic Brain Injury Patients Admitted to PICU,” aims to improve the care and outcomes for children facing severe brain injury.

“I am very passionate about this topic, particularly as our bedside management is absolutely critical to preventing further brain injury from the inflammation and damage that occurs in the days following the accident,” shares Alyssia.

Her project aligns closely with new guidelines being introduced by WCH consultants and neurosurgery teams, and will provide valuable insights into current practices, gaps, and areas for improvement in neuroprotective care. “Protecting the brain is an extremely complex balancing act and it is so important we get it right,” she says. “Ultimately this project will help support our goal of helping these children achieve their best possible neurological outcome.”

Through ongoing investment in nurses’ professional development and innovative care, Matthew’s legacy continues helping drive better futures for children and families in PICU and beyond.

The commitment and passion of Bridget Claire McCartan for burns nursing continues to leave a lasting mark on the field, empowering dedicated nurses to advance their expertise and deliver exceptional care.

To honour her memory and tireless dedication, the Bridget Claire McCartan (BCM) Scholarship was established by Bridget’s family to support nurses committed to burns care, offering them opportunities for professional growth and fostering excellence within the specialty.

For Round 1 of 2025, the scholarship was proudly presented to two outstanding recipients, Rochelle Claude (pictured far left) and Amy Myatt (pictured second from left). Selected for their outstanding dedication to advancing burns care, Amy and Rochelle have been awarded the opportunity to attend the Australian and New Zealand Burn Association (ANZBA) Nursing Seminar, taking place in Hobart on May 30 – 31, 2025.

This opportunity, made possible through the BCM Scholarship, offers a valuable platform for nurses to expand their knowledge, share best practices, and further develop their expertise in burn injury management and care.

Looking ahead, the scholarship continues to pave the way for even greater opportunities. Round 2 of the 2025 BCM Scholarship will open soon, offering another chance for nurses to attend the ANZBA Annual Scientific Meeting held in Adelaide, between October 14 – 17, 2025.

Through the ongoing support provided by the Bridget Claire McCartan Scholarship, Bridget’s legacy lives on as a source of inspiration, empowerment, and excellence in the care of burns patients.

Professor Geoffrey Davidson, the founding head of Gastroenterology at the Women’s and Children’s Hospital and an Emeritus Professor of the Discipline of Paediatrics at the University of Adelaide, was a leader in the field of paediatric healthcare. His passing in 2020 marked the loss of a remarkable clinician-researcher whose contributions transformed the health outcomes of children around the globe.

With a medical and research career that spanned decades, Professor Davidson’s work has had a lasting impact, both nationally and internationally. He was part of the team of researchers who discovered Rotavirus, a viral cause of severe diarrhoea in infants and young children. Until the early 2000s, Rotavirus remained a major cause of gastroenteritis in children under five worldwide. The discovery of this virus led to the development of a life-saving vaccine, which has since significantly reduced illness, hospitalizations, and deaths among young children across the world.

In addition to this groundbreaking work, Professor Davidson was a pioneer in the development of breath hydrogen testing for sugar malabsorption in children. His innovative research not only advanced the understanding of gastrointestinal disorders in children but also improved diagnostic methods, offering families new avenues for treatment and care.

To celebrate and carry forward his extraordinary legacy, the Geoffrey Davidson Gastroenterology Research Development Fellowship was established in his honour. Each year, the Fellowship supports research development activities in non-medical staff working in Gastroenterology at the Women’s and Children’s Hospital.

The creation of this Fellowship was made possible through the love and support of Professor Davidson’s wife, Marnie, as well as the generosity of his family, friends, and colleagues. Their commitment ensures that clinicians and researchers can continue to publish their work, share discoveries, and stay informed about the latest advances in paediatric gastroenterology. By supporting the development of future clinicians and researchers, this Fellowship allows Professor Davidson’s influence to endure, fostering new breakthroughs and leading healthcare that will positively impact on children’s health.

The 2024 fellow is a nurse practitioner in the Gastroenterology Department of the Women’s and Children’s Hospital since 1999, who was personally selected for her role by Professor Davidson himself. Helen Jurgens (pictured above with Marnie Davidson), who is in the process of becoming a dedicated IBD nurse practitioner, will be using the fellowship to support her attendance at the 2025 Paediatric Inflammatory Bowel Disease (IBD) conference, where she hopes to enhance her knowledge of new and contemporary practice in IBD management.

Helen shared her gratitude for the opportunity:

“Despite not being part of our Gastroenterology team for several years, Geoff is still spoken of often with much respect and fondness. He was a wonderful, inspirational, and supportive mentor, and I feel very grateful and privileged to receive this fellowship in his honour.”

Professor Davidson’s legacy is one of discovery, dedication, and compassion for the health of children. His life’s work has touched countless lives, and through the Geoffrey Davidson Fellowship, his contributions will continue to inspire and shape the future of paediatric gastroenterology for many years to come.

Geoffrey Davidson Gastroenterology Research Development Fellowship rounds will be advertised on our Research Funding Opportunities page.