As part of our ongoing efforts to strengthen connections within our Prader-Willi syndrome community, our newly established Regional Hubs Subcommittee hopes to hold regional gatherings each year for individuals and families across Aotearoa. These will provide opportunities to: connect share…
In March this year, we returned to MiCamp Taupō where we were treated to lakeside sunshine once again. This was our largest camp to date with 94 people registering to attend. This year our 4 activity groups formed 'teams' and…
We held our first transition event during October, with one day focused on support agencies and providers, and the other day focused on families. We hope the event was beneficial to those who attended, but I think it was also…
APPWS2024 was jointly hosted by PWS Australia and PWRFA (Prader-Willi Research Foundation Australia), August 30th - 31st, 2024. A number of delegates attended from New Zealand, who were mostly speaking, or members of the organising committee. There was also a…
The supermarket shelves become increasingly full of chocolate Easter goodies in the weeks leading up to Easter (or even for months?) Anticipation about the treats that Easter may bring can create much excitement for all children, let alone individuals and…
Our Family Camp finally took place after a 3 year gap due to Covid disruptions. It was lovely to return to MiCamp Taupō where the sunshine came out for us once again. The activities differed slightly to our previous camp,…
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…
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…
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…
MARCH 2022 - The prevalence rate of scoliosis in PWS has not been well established with figures ranging between 40% to 80% of patients in various studies and surveys. It is known that scoliosis typically increases with age, with occurrence…