Adults Living with PWS Leadership | RURU Group

The RURU Leadership Group aims to meet approximately every 2 months online.
Mondays or Wednesdays @6.30pm, or weekends after 3pm.
Contact: enquiries@pws.org.nz

Meetings might be about a planned topic or we might have a guest speaker.
If you have a suggestion for the next meeting, please get in touch.

GROUP OBJECTIVES:
Support and advocacy for people living with PWS.
Social connection.
Advisory group to PWSA(NZ) Committee.

ALPWS LEADERSHIP RESOURCES:
– The School Years and PWS
– What others Need to Know
– Recommendations for Support Staff

Leadership and Social Weekend – Nov 2023, Surrey Hotel, Auckland

This weekend was attended by 21 adults living with PWS and great fun was had by all. A videographer also attended and captured weekend footage, as well as filming focus sessions: role plays, an advisory panel, and individual interviews.

Leadership Meeting – March 2023, MiCamp Lake Taupo

This meeting was held during Family Camp and attended by approx 17 adults living with PWS. There was discussion about the developing role of the group, and future goals were set: establish more leadership opportunities, develop peer support, organise more social events, attend PWSA board meetings, fundraise, raise awareness, use Facebook more, and make PWSA work better for adults living with PWS.

This was followed by discussion about peer support and how the group could support younger individuals going through difficulties at school. Click here for a summary >

Leadership and Social Weekend – October 2020, Surrey Hotel, Auckland

This meeting was held during a Leadership and Social Weekend in Auckland that was attended by 15 adults living with PWS. The weekend had a focus on developing advocacy and leadership skills in addition to enjoying social time together. In one session, the group practiced using Zoom so that they will be able to keep in touch more often in future.

During another activity we asked what others should know about PWS. The group had discussed similar ideas before at the last leadership group meeting, but this time, we asked them to work in groups to say what information we should include in a new resource for peers, flatmates, classmates etc. It became clear that getting the right information across really mattered, and the messages were strong. It also became apparent that the best people to convey these messages were themselves and a well supported suggestion was made that a video produced by the group could convey important information very well. Click here to read What Others Need to Know >

Leadership Meeting – Feb 2020, MiCamp Lake Taupo

This meeting was held during Family Camp and was attended by 18 adults living with PWS. Lots of time was spent discussing ideas about the most valuable or important information for us to be sharing in PWSA training sessions or educational resources for support staff.

A summary of recommendations are:

Understand the importance of a good diet and an exercise plan/routine.
Offer different exercise options.
Find out why we are anxious (and examples of this were discussed).
It is important we are treated as adults.
We need to be kept busy and not bored or thinking about food – try to help us NOT think about food.
Be respectful about food (e.g. don’t turn up with food).
Be understanding. We are not always able to explain ourselves or our thoughts. We are often mis-understood.

There was an emphasis on points such as:

Being aware that despite having PWS, everyone is different, unique, and has different learning styles and preferences.
Wanting others to know that they have their own voice and opinions.

Other points made at the meeting were:

A call for an adults camp because they would like to be able to see each other more often.
The Leadership Group would like more involvement in planning and helping with activities at future camps.
Facebook chat was discussed and the possibility of Zoom meetings.