When the research commenced, ACVIR was focused on capturing clinical data, but over time, ‘we have broadened our focus to include more about the child and their family. Children and families have lived experience of low vision and their comments are thought provoking and insightful. They help us build our understanding and remind us of what matters – the child and their family, not just their eye condition and the services that surround them.’
Childhood eye and vision conditions are rare and this can lead to a lack of awareness by agencies who engage with families—such as the NDIS. Reporting from ACVIR findings helps establish a foundation of understanding, to recognise childhood vision loss as a legitimate condition that causes significant impact on a child and family and should be included for funding purposes.
ACVIR also provides the opportunity for NextSense to collaborate with other researchers in the field.
‘Families nominate if they would like to be included in contemporary research related to their child's eye condition,’ Dr Silveira says.
‘As opportunities arise, families are invited to participate in research being conducted by our partners that may benefit their family—such as gene therapy. ACVIR is a great way to connect families to this type of research.’
ACVIR has also allowed families to contact Dr Silveira when they’ve needed help. ‘We have been able to help untangle issues families are facing, and to point them to support they didn't realise they were entitled to,’ she says.
ACVIR has also helped build strong relationships with Australian parent advocacy groups who in turn, inform families about the project. ‘We work closely with these parents to connect families, to raise the profile of children and to search for opportunities for grants and funding.’