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Autumn 2026 15 While cerebral palsy is often linked to birth prematurity, or oxygen deprivation at birth, many babies with cerebral palsy have apparently normal births. A growing body of evidence suggests as many as 25 percent of cases may have a genetic origin. With the average age of diagnosis sitting around two years, babies can miss out on valuable interventions during a critical window of neuroplasticity and physical growth, Susan explains. “By the time you're two-and-a-half, three, you're almost half your adult height. So that's a period of extremely rapid growth and acquisition of motor skills. “Neurological damage is usually non-reversible, which makes early action critical to reduce the impact of disability over a lifetime.” Since2015, theNewZealandCerebral PalsyRegister has collectedbasic informationonaround65percent of cerebral palsybirths. Thenewplatformwill significantly expand this, inviting familieswithababyor childdiagnosedwithcerebral palsy to takepart in studies involvinggenetic sequencing, MRI, and long-termfollow-up, with theaimof covering80 percent of theunder-21 cerebral palsypopulation. From there, the vision is to expand to babies at high risk of cerebral palsy, driving early detection and creating opportunities for early intervention. Genetic sequencing for babies with cerebral palsy can’t yet always confirm if the cause is genetic. However, if it does turn out to be genetic, peoplewith cerebral palsy could access a targeted therapy if one is developed in the future. “This grant comes at a pivotal time, moving us from simply collecting health information to becoming a national research platform – building a deeper understanding of the condition over time, while also identifying which children may be suitable for emerging treatments, including early-stage clinical trials targeting genes,” says Susan. Genetic sequencing will be led by Professor of Genomics Justin O’Sullivan, Director of the Liggins Institute, which specialises in the role of genetics, early life events and nutrition in babies’ developing brains. In many cases, testing will involve parents as well as children, helping researchers interpret findings accurately. “For years there’s been this dogma that cerebral palsy is an accident of birth,” Justin says. “But that’s hiding a whole lot of things that may actually be treatable or modifiable.” In the case of cerebral palsy, it is estimated genetic factors may play a role in around 25 percent of cases, linked to approximately 250 different genes. Justin estimates that around eight percent of all cases could be genetically treatable. “Some of those treatments might be quite simple, such as repurposing an existing drug,” he says. “These approaches have changed dramatically over the last few years, often in ways the public isn’t fully aware of yet. I think we’re going to see a surge in these advances reaching people with health conditions, and I hope that lifts the standard of care and has real impact. “But we don’t know what we don’t know until we look,” he says. “And part of this project is finding the things we don’t yet understand.” Justin says collecting data from babies born with cerebral palsy today may not benefit them immediately but could do so later in their lives. It could also provide critical insights that change the course of the condition for babies born years from now. “These are long-term relationships with the potential to benefit communities for decades. That’s why we do science. This project is the start of a relationship that I hope lasts throughout my career and builds on the expertise of peoplewho haveworked in cerebral palsy for a long time.” Professor Susan Stott (right) with NZ Governor-General and Neurological Foundation patron Rt Hon Dame Cindy Kiro.