NurtureNextGen is guided by a Consumer Advisory Group made up of ten parents who have direct experience supporting a child with a genetic neurodevelopmental condition. The group includes parents who are also advocates, researchers, community leaders and contributors across health and disability sectors, bringing perspectives shaped by both personal and professional roles.
Working closely with the research team, the Consumer Advisory Group met in May and December, contributing at key stages of the project’s development. During the May meeting, members participated in a collaborative brainstorming activity, sharing ideas and priorities that helped shape early design concepts for the digital support tool.
The group’s role is central to the project because the tool is being developed for parents, in partnership with parents. Advisory group member Maya Pinn reflects on her personal insight, “turning that experience into something positive became a way forward”, helping to inform the development of a tool intended to support other families navigating complex systems.
Beyond design input, the Consumer Advisory Group has supported the development of recruitment materials and the dissemination of project information. Drawing on their experience within advocacy organisations and community networks, members provided feedback on language and framing to ensure materials remain clear, respectful and relevant.
Through ongoing collaboration with the research team, the Consumer Advisory Group helps keep the project grounded in the realities of family life and focused on creating a tool shaped by parents, for families.
Read more about the NurtureNextGen Consumer Advisory Group here.
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