Adults Living with PWS (ALPWS) Leadership
The ALPWS Leadership Group aims to meet monthly via Zoom and once per year in person.
MEETINGS: 2nd Monday of each month @7pm.
Zoom Link: tinyurl.com/2p8humu8
Contact: cindy@pws.org.nz | 027 637 4893
NEXT MEETING AGENDA:
– PWSA website
– Prioritising group goals
GROUP OBJECTIVES:
Support and advocacy for people living with PWS,
Promote social connection and activities,
PWSA board representation.
ALPWS LEADERSHIP RESOURCES:
– The School Years and PWS
– What others Need to Know about PWS
– Recommendations for Support Staff
–
Leadership Meeting – March 11th 2023, MiCamp Lake Taupo
This meeting was held during Family Camp and was attended by approx 17 adults living with PWS. There was discussion about the developing role of the Leadership Group and goals were set for the group representatives: establish more leadership opportunities, develop peer support, organise more social events, attend PWSA board meetings, to fundraise, to raise awareness, to use Facebook more, and to make the PWSA work better for ALPWS.
This was followed by a discussion about peer support and how the Leadership Group could support younger individuals going through difficulties at school. Click here for a summary >
Leadership Meeting – 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 about PWS >
Leadership Meeting – Feb 29th 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.
- 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.