Your Association
PWSA(NZ) was established in 1989 as a parent support network, originally under IHC. We have served as an incorporated society with a governing board since 1991, and with charitable status since 2008. With a range of membership options available, our membership continues to grow, comprising parents, carers, support service personnel, professionals and adults living with PWS. The PWSA does not have a national office but operates nationally, currently employing one person part-time. We receive a small amount of funding from a contract with MSD to provide disability information and advisory services (DIAS), and occasional funding from successful applications to grant providers and charitable trusts.
Donations are essential to enabling us to achieve our purpose, and they are very gratefully received. Registered Charity Number: CC46009.
Mission Statement
To enhance the lives of New Zealanders living with Prader-Willi syndrome, and their families / whānau by:
- providing advocacy, education and support services,
- collaborating with other organisations that have similar objectives, both in New Zealand and overseas,
- encouraging research, projects, and the exchange of ideas and experiences that build knowledge and understanding of PWS and/or improve the quality of care and support for persons living with PWS.
Our Team
Jo Davies, CEO, Operations and Projects Manager
Jo has an adult son with PWS and lives on the Kapiti Coast, near Wellington. She has worked at PWSA in administration and operations since 2011, and more recently as CE and training facilitator. Jo’s previous experience was in teaching.
Email: ceo@pws.org.nz
Rebecca Payne, Young Families Support Coordinator
Rebecca lives in Auckland with her young family, including her eldest son who has PWS. Rebecca was keen to offer support to other young families after appreciating the contacts she made when her son was first diagnosed.
Email: youngfamilies@pws.org.nz
Sarah Verran, Committee Chairperson
Sarah joined the board in 2025 after attending a family support camp with her adult daughter who has acquired PWS symptoms. Sarah became our Chair in 2026 and brings many years of governance experience to PWSA(NZ).
Email: chairperson@pws.org.nz
Our Committee
Chairperson:
Sarah Verran
Treasurer:
Rachel McLellan
accounts@pws.org.nz
Committee Officers:
Hayley Arnott, Secretary
Cindy Adams-Vining
Julie-anne Quinney
Jeanette Mabin
Bjørn Christensen
Samantha Quinn
Our Regional Support Groups
PWSA’s Regional Hubs Subcommittee have established Regional Support Hubs for the areas below. The hubs are connected via WhatsApp groups and provide a space for online connection and discussion about local support services. The aim is for each hub to hold regional in-person events each year.
Northern: Auckland / Northland
Midland: Taranaki / Waikato / Bay of Plenty / Gisborne
Central: Whanganui / Manawatu / Hawkes Bay / Wellington
Upper South: Tasman / Nelson / Marlborough / West Coast
Mid South: Canterbury
Lower South: Southland / Otago
Click here to join a Regional Hub >
Our National Support Groups
National connection and support is available via our private Facebook groups, catering for parents of children and adults of various ages, and for individuals living with PWS.
All ages
0 – 5 years
6 – 12 years
13yrs – adulthood
Adults living with PWS
Our Sponsors
