About the Prader-Willi Syndrome Association (NZ) Inc

Postal Address: 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. Cindy Adams-Vining, our Residential Training Manager and Family Support Co-ordinator, holds a variety of flexible training sessions across the country, through-out the year.

Email Cindy (Residential Training Manager): pws-south-island@xtra.co.nz

Advocacy

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

Resources

We have a wide range of resources for parents, carers and educators including books, pamphlets, DVD's, information pages, published research and newsletters.

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 our CEO, Karen O'Reilly: ceo@pws.org.nz

If you have a teenage or adult son/daughter with PWS, you can contact our Family Support Co-ordinator, Cindy Adams-Vining: pws-south-island@xtra.co.nz

Or you can call us on 0800 4 PWS HELP

Annual Events

Each year we we hold family events where parents, siblings, those with PWS, and their extended family, can meet, talk and make friends. Sometimes we are able to offer workshops with expert speakers and every four years, an Asia-Pacific PWS Conference is held. We will keep you informed of these events through our website, email and newsletters.

Newsletters

Our magazine, "PWS Downunder", is sent to all members of the Association and includes up-to-date information from New Zealand, Australia and around the world. Back copies are available to read in our publications section. We also keep in touch with monthly e-newsletters. To subscribe to our mailing list, please contact our Administration Manager. Up to date news can also be found on our Facebook page: www.facebook.com/PraderWilliSyndromeAssociationNZ

Our latest Annual Report is available to read online. Click here to read Annual Report for 2012.

Membership

By becoming a member of the the Association you will receive our 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!

Although we value donations, family membership (for those with an immediate family member with PWS) is free of charge. Otherwise, annual membership is NZD30.00, payable to the Prader-Willi Syndrome Association (NZ) Inc, Box 258, Silverdale, Auckland, 0944. Please see our subscriptions page for further details.

For membership enquiries email our Administration Manager: jo.davies@pws.org.nz

Who are we?

Board of Trustees

Chairperson: Gerald Williams

Board Members: Grant Rogers, Gavin Kane, Deborah Harnett, Sarah McLarin

Employees

CEO: Karen O'Reilly: ceo@pws.org.nz

Administration Manager: Jo Davies: jo.davies@pws.org.nz

Family Support and Training: Cindy Adams-Vining: pws-south-island@xtra.co.nz

Treasurer: Nick Thornton