PWSA(NZ) Transition Symposium

We held our first transition event during October, with one day focused on support agencies and providers, and the other day focused on families. We hope the event was beneficial to those who attended, but I think it was also beneficial for us as a team to work through all the issues whilst planning the event. It has also helped highlight areas where greater advocacy is needed.

One of our PWSA committee members, Julie-anne Quinney, provided essential input to the planning and running of this event alongside Cindy and I. Julie-anne is a Transition Coordinator for Spectrum Care and is a great source of information and contacts. She is very happy to be contacted by families with any questions around transition.

We would like to thank all our invited speakers for giving up their time to present for us: lawyer Nan Jensen, psychologist Dr John Ford, endocrinologist Prof Paul Hofman, psychiatrist Dr Diana Andrea Barron, and Transition and Disability Information Advisors, Marian Galvin and Robyn Hoffman.

Also, a huge thank you to the International Prader-Willi Syndrome Organisation (IPWSO) and Friends of IPWSO(USA) for their generous sponsorship of this event.

Our next step is to compile some of the information shared at the event into a useful transition pack to disseminate to families in future. We also aim to prepare information to share with support agencies and providers because whilst there will be similarities in transition planning for someone with PWS compared to transition planning for any person with intellectual disability and vulnerabilities, there are also some unique differences and specific needs in PWS which require consideration.

Please find below some useful contact details and our programme for each day: