About the Prader-Willi Syndrome Association (NZ) Inc

Postal Address: PO Box 258, Silverdale, Auckland 0944

Freephone (NZ only): 0800 4 PWS HELP (0800 4 7974357)

Telephone: +64.9.427.5404

Patron: His Excellency Lieutenant General The Right Honourable Sir Jerry Mateparae, GNZM, QSO, Governor-General of New Zealand

The Prader-Willi Syndrome Association (NZ) Inc, was established in 1989 by a small group of parents concerned that there was no support for their children, and very little information available on the syndrome. Originally under the auspices of the IHC, the Association became a registered incorporated society in 1991 with a governing board.

The Association is a parent support network formed to improve the quality of life for all persons with PWS in New Zealand and their families. It also aims to collaborate and affiliate itself with other organisations with similar objectives both in this country and overseas and to encourage research and exchange of ideas, projects, and experiences in regard to the best practice and management of this syndrome.

The Association is a member of the International PWS Organisation www.ipwso.org

Education and Training

The Association is able to offer education and training to early childhood education centres, schools, residential homes and day programmes. If you feel that the professionals working with your child could benefit from such training - get in touch with us. Linda Thornton, our Training and Residential Manager, holds a variety of flexible training sessions across the country, through-out the year.

Email Linda - lindathornton@pws.org.nz

Advocacy

The Association offers an advocacy service to help support you through your child's transition stages - early childhood education, school, secondary schools, special needs, transition into the workforce and transition into residential care.

Resources

We have a wide range of resources including books pamphlets, DVD's, booklets, texts, newsletters, and audio tapes. Many of these are from the most recent international conferences.

Parent Contacts

We have parent contacts in all areas and can put you in touch with a family with a similar aged child as your own.

If your child is 0-11 years you can contact Emma McConachy - emma.mcconachy@pws.org.nz

If your child is 11-18 years you can contact Emma McConachy - emma.mcconachy@pws.org.nz

For our adults 18 years + you can contact Cindy Adams-Vining - cindy.adams-vining@pws.org.nz

Or you can call us on 0800 4 PWS HELP

Annual Events

Each year we we hold a family event where parents, siblings, those with PWS, and their extended family, can meet, talk, attend workshops, listen to experts, and make friends. We will keep you informed of these events through our website, email and our newsletter.

Newsletters

Our quarterly newsletter, "PWS Downunder", is sent to all members of the Association and includes up-to-date information from New Zealand, Australia and around the world. These are available to read in our publications section.

The latest Annual Report is available online. Click here to read the Annual Report for 2010.

Membership

By becoming a member of the the Association you will receive our quarterly newsletter, "PWS Downunder", and have voting rights at our Annual General Meetings. Membership is one way you can support our Association and the work that we do. Of course, you do not need to be a member to receive support - just get in touch!

Annual membership is NZD25.00, payable to the Prader-Willi Syndrome Association (NZ) Inc, PO Box 258, Silverdale, Auckland, 0944

For membership enquiries email us: jo.davies@pws.org.nz

Who are we?

Board of Trustees
Chairman: Gerald Williams

Treasurer: Nick Thornton

Board Members: Angus Capie

Cindy Adams-Vining

Emma McConachy

Melanie Sweet

Grant Rogers

Gavin Kane

Deborah Harnett

CEO: Karen O'Reilly
Administration Manager: Jo Davies

Training & Residential: Linda Thornton

Email: ceo@pws.org.nz