Prader-Willi Syndrome (PWS) is a rare and complex neurodevelopmental, genetic disorder which occurs in around 1 in 16,000 births and affects approximately 200 New Zealanders.
PWS alters functioning of the hypothalamus in the brain causing a wide range of symptoms including impacts on cognition, emotional regulation, growth, muscle development, metabolism and appetite – most people with PWS are always hungry. Each individual is affected to varying degrees by each symptom. Learn more ›
November 17, 2019
We have recently held Young Families Weekends approximately every 2 years. Our latest weekend for families of newly diagnosed or young children was held at the Top 10 Holiday Park in Christchurch. Both adults and children enjoyed meeting new people…
Read more ›August 31, 2019
AUG 2019 – Can a GABA-modulating drug normalise the balance of neurotransmitters in the brain and improve behaviour in PWS? GABA (gamma aminobutyric acid) is an amino acid acting as a brain neurotransmitter (chemical messenger.) GABA inhibits certain brain signals…
Read more ›June 14, 2019
Following the success of our previous Tweens and Teens Weekend in 2017, we recently held another weekend, this time in Wellington. Our weekend programme was full of activities which included lots of sight-seeing around our capital city and we were…
Read more ›Training days available for Residential Care Support Staff – postponed until end Jan 2020. Our Training Manager will be available to facilitate staff training in the Christchurch / Canterbury area and this is likely to be during the last week…
Read more ›PWSA Family Camp 2020 – REGISTRATION OPEN! People with PWS of all ages are welcome to attend with their family or a support worker. Book now by completing a registration form and sending your camp confirmation payment. Flight or ferry…
Read more ›
