6th Asia Pacific PWS Conference – Sydney
APPWS2024 was jointly hosted by PWS Australia and PWRFA (Prader-Willi Research Foundation Australia), August 30th – 31st, 2024.
A number of delegates attended from New Zealand, who were mostly speaking, or members of the organising committee. There was also a virtual registration option which attracted both family and professional attendees.
Day 1 focused on research, with a varied and interesting programme put together by PWRFA. Some of the research presented was taking place in other parts of the world, but many presentations focused on Australian research projects. PWRFA are doing wonderful work accelerating clinical trials and expertise in our region.
We were also very lucky to have two highly regarded plenary speakers attend and speak at the conference, Prof Tony Holland and Dr Deepan Singh. For many people, the ‘Fireside Chat’ that took place during the conference dinner with Tony and Deepan, two leading psychiatrists in the field of PWS, was a highlight of the conference.
The Day 2 programme covered a range of topics on aspects of health, development, and supporting families. The day ended with an important reminder for families to nurture their own wellbeing and by hearing from families who shared their own experiences. A 2nd stream for residential support providers ran alongside the family / health programme. This stream could not be livestreamed unfortunately, but learnings /recordings will be shared from this in time.
We have compiled a conference report which covers many presentations from the research and family/allied health days. A summary of the support providers day has not been included in this report due to being unable to be in 2 places at the same time, but I did get to listen to New Zealand’s Dr John Ford, psychologist and behaviour support specialist at Community Connections, and to Neil Gumley, Director of The Orange Hive in Melbourne. See some notes on these presentations below.
Click here to read our Conference Summary Report >
Residential Support Providers Programme – some key takeaway points:
John Ford, Community Connections – Overview of Current PWS Trends and Literature
What Helps?
- Have a plan
- Consistency and teamwork
- Mutual support
- Sharing our stories (community of practice)
Neil Gumley, The Orange Hive – Friends, Relationships and Sexuality
Friendships – The Challenges
- Social skills
- Obsessive behaviours
- Emotional regulation
- Hypotonia and motor issues
- Communication difficulties
Friendships – The Benefits
- Social skill development
- Emotional support
- Enhanced quality of life
- Increased independence
- Cognitive behavioural growth
People living with PWS will make mistakes, like everyone. Support them to make mistakes in a safe way.
Thank you to the generous sponsors of APPWS2024:
