Prader-Willi Syndrome (PWS) is a rare and complex neurodevelopmental 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 which include 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 ›
October 21, 2022
Halloween is growing in popularity in Aotearoa New Zealand, making it increasingly difficult to avoid for those who choose not to participate. Fortunately, trick or treaters will usually only call on the houses that indicate they are participating by leaving…
Read more ›September 30, 2022
SEPT 2022 – A focused campaign by the Foundation for Prader-Willi Research (#VNS4PWS) has been raising funds toward a large-scale trial of VNS which will be conducted across multiple centres in the USA. This trial requires quite significant funding, but…
Read more ›September 28, 2022
On the weekend of September 17th and 18th, our Young Families Weekend finally took place after unfortunate Covid-19 postponements – it was fantastic to be able to connect with others again in person. The weekend was attended by several families…
Read more ›These meetings will generally take place on the last SUNDAY of each month at 7.30pm. Each month is for parents with children of a different age range, so there will be a meeting for each parent group every 3 months.…
Read more ›Our next Family Camp is taking place 10th – 12th March, 2023. It is being held at MiCamp Taupo. All registrations and contributions for the postponed 2022 camp are being rolled over to 2023 and new registrations are still welcome.…
Read more ›Our Zoom Chats were monthly facilitated social groups which were a place for a general catch-up and to enjoy playing some games together. They used to take place on the 1st and 2nd Saturdays of each month for different age…
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