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Headlines – Special Edition 16 Susan points to a recent opportunity in Australia to join the world’s first gene therapy trial for a very rare, genetically-defined form of cerebral palsy. “They askedwhether wemight have children inNew Zealandwith thismutation,” she says, “and the honest answer is – probably. But becausewe don’t routinely use genetic screening in cerebral palsy, we simply don’t know who they are, or howwewould even find them,” says Susan. “At the moment we're aware of parents paying quite large sums of money to go to places like America or Australia to join clinical trials. And we think that's a shame because we probably have everything we need to reproduce that trial in New Zealand. “If we can identify a genetic cause, just being able to give that knowledge can be incredibly important for families.” Alongside testing and collecting data, Susan emphasises that involving the cerebral palsy community is vital to ensure the research is responding to what families want. “A lot of research in the past was done without really engaging with the disability community. We’re pleased to be working with Amy Hogan, a researcher at the Cerebral Palsy Society with lived experience, so we have a co-designed, co-produced approach to research.” Amy Hoganwas diagnosedwith cerebral palsy at around two or three years old (circa 1988–89). “My mum received a letter in the mail. It was traumatising for her,” Amy says. Her experience livingwith cerebral palsy has been complex, lifelong, and affecting both big and small aspects of daily life – particularlymobility, stamina, and painmanagement. “Making ‘everyday life’ possible often requires careful, precise planning and ongoing, often invisible labour.” Amy has built a career as a disability advocate, working to ensure the voices of people with cerebral palsy are reflected in research, services, and decision-making. She says being involved in theproject aligns her commitment to research guidedby thedisability community. “We need more research and advocacy that reflects the broad spectrum of experiences and support needs, particularly beyond childhood, so that people with cerebral palsy are supported not just to survive, but to thrive across their lives,” Amy says. “Having this scale of coordinated information in Aotearoa has previously felt unattainable, and it opens the door to better-informed decisions, earlier interventions, and more responsive systems of care.” Reflecting on her own experience, Amy acknowledges that families and clinicians did the best they could with the knowledge and resources available at the time. Since then, she says, there have been real improvements in how cerebral palsy is understood and communicated, including growing recognition that cerebral palsy is lifelong and affects people in many different ways. “This funding represents a foundational step toward enabling New Zealanders with cerebral palsy to embody the te reo Māori concept associated with cerebral palsy: Hoki Nukurangi – to achieve what is important to you, through many different pathways,” says Amy. “By strengthening the evidence base and centring lived experience, this work supports dignity, choice, and participation for individuals and whānau across Aotearoa.” Amy Hogan (centre) from the Cerebral Palsy Society, and Alexandra Sorhage, a cerebral palsy researcher from Starship Children's Hospital.