Rett New Zealand brings in the experts

Rett New Zealand conferences make it possible for families to hear directly from international experts about  the latest developments in understanding Rett syndrome.

Since 2012 the IHC Foundation has contributed funds towards the Rett New Zealand Trust’s biennial conferences, which regularly feature American Rett education specialist Susan Norwell along with local medical specialists. 

Rett syndrome is a neurodevelopmental disorder that almost exclusively affects girls and has a profound effect on their ability to communicate. Susan Norwell has introduced New Zealand families to eye-gaze technology that allows them to communicate with their eyes.

Rett New Zealand conferences allow families to network with other families and professionals. They offer individual consultations between families and local and international experts, lectures on genetics, discussion groups and practical sessions on caring for someone with Rett syndrome. 

For the 2018 conference in Auckland in May, Susan Norwell was invited to talk to parents and teachers about supporting girls to learn to read and write through eye-pointing technology. 

Rett New Zealand Trust Chair Dugald MacBrayne says some girls with Rett syndrome can speak, but most cannot. “The ultimate cruelty is that some speak and then lose the ability to do so. Susan Norwell is a specialist in communicating with non-verbal children.” He says the eye-gaze technology has opened new horizons for the girls and their families.

Auckland Paediatrician Dr Rosie Marks, who works at Starship Hospital’s Developmental Paediatrics Service, also made time for individual appointments during the conference.

Dugald says about 40 families attend the conferences. Some bring their daughters, but not all the girls can travel. “It’s a huge networking opportunity for parents. It also allows people from Southland, Northland, all over the country, to meet people with the same problems and who think the same way.”

Dugald says it’s costly for parents to travel to Auckland, but the Rett New Zealand conference itself is free, thanks to support from the IHC Foundation, the Deane Endowment Trust and other sponsors.