6th Asia Pacific PWS Conference – Sydney
*** UPDATE: Recordings of presentations are now available below ***
Day 1 research focus via PWRFA YouTube,
Day 2 via PWS Australia.
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 mainly speaking or a part of the organising committee. The virtual registration option 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, two leading international psychiatrists specialising in PWS. For many people, the ‘Fireside Chat’ that took place during the conference dinner with Tony Holland and Deepan Singh was a highlight of the conference.
The Day 2 programme covered a range of topics around health, development, and supporting families. The day ended with an important reminder for families to nurture their own wellbeing, and 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.
Please see our Conference Summary Report below. This 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 attend two streams at the same time.) However, we include a few notes below on the presentation by New Zealand’s Dr John Ford, a psychologist and behaviour support specialist at Community Connections, and the presentation by Neil Gumley, Director of The Orange Hive in Melbourne.
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:
