Prader-Willi Syndrome Association of NZ

WHAT IS PRADER-WILLI SYNDROME?

Prader-Willi Syndrome (PWS) is caused by a very small gene deletion in the 15th chromosome. It is a random occurrence and to date there has been no discovery as to why this happens. Statistics suggest that the occurrence rate is 1:25,000 giving a population in New Zealand of approximately 230 people. The PWS Association (NZ) Inc. knows of about 130 people with this syndrome.

PWS has been described as a two-stage syndrome. In the first, a "failure to thrive" is seen, weight gain is slow and developmental milestones (both physical and intellectual) are delayed. The baby tends to be "floppy" due to low muscle tone. In the second stage, a state of "thriving too well" emerges as muscle tone improves.

WHO ARE WE?

Formed in 1989, the PWS Association (NZ) is a support group for those who have the syndrome, their families, and all who come in contact with PWS. We are the leading resource centre for PWS in New Zealand. We have parent contacts in most centres and can put you in touch with a support person anywhere in New Zealand.

OUR WORK

The Association offers an advocacy service to help support you through your child's transition stages - kindergarten, school, secondary schools, special needs, transition into the workforce, etc.

OUR RESOURCES

We have a wide range of resources including pamphlets, videos, tapes, booklets, texts, newsletters, and audio tapes. Our quarterly Newsletter, "Pickwick Papers" is sent to all members, Each year we also have a family convention, held at different locations throughout the country.

Our website also carries detailed information on the syndrome, advice on schooling and coping in general, family stories and useful links.

CONTACT DETAILS

Prader-Willi Syndrome Association (NZ) Inc.
Linda Thornton
National Coordinator
Prader-Willi Syndrome Association
PO Box 143, Masterton
New Zealand
freephone 0800 4 79743
website www.pwsa-nz.co.nz

Annual membership is NZ$20.

This information has been supplied and approved by the Prader-Willi Syndrome Association (NZ) Inc. and is copyright protected. The content and design of this page must not be reproduced electronically or in print without the written permission of UBM Medica (NZ) Ltd.