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…
We are aware that some children with scoliosis are not being diagnosed until their curve is quite severe. This is concerning because an earlier diagnosis can lead to treatments that reduce the curve or halt progression. Scoliosis can remain well…
On International Rare Disease Day, PWSA(NZ) stands with Rare Disorders NZ calling for action from Government to commit to a National Health Strategy for Rare Disorders. Today, Rare Disorders NZ released their Voice of Rare Disorders survey 2021, the largest-ever…
JAN 2022 - A New Drug Application for LV-101 (intranasal carbetocin) was granted FDA Priority Review last year for the treatment of hyperphagia and behavioural symptoms in PWS, but ultimately, the review was unsuccessful as there were concerns about efficacy.…
The build up to Christmas, the increased number of social events, and the holiday celebrations themselves can all cause additional anxiety for individuals living with PWS and their families. Some tips to reduce stress on Christmas Day are: Plan ahead…