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…
Together with the PWS Associations of Australia, Malaysia and Thailand, we held our first virtual conference in October 2021, which was also the first Asia Pacific conference to be co-organised by 4 countries. From attendee feedback received, it seems that…
NOV 2021 - The hypothalamus and hindbrain have previously been implicated in appetite regulation, but drugs targeting these areas have not been as successful as hoped. Dr. J. Nicholas Betley, of the University of Pennsylvania, and Dr. Albert Chen, of…
The Government has announced long awaited news regarding planned changes as part of disability system transformation. The key changes announced were: • The establishment of a Ministry for Disabled People to lead ongoing transformation of the broader disability system. •…
SEPT 2021 - DCCR (Diazoxide Choline Controlled Release) is a once-daily treatment for hyperphagia and body composition being developed by Soleno Therapeutics for the PWS community. DCCR is thought to affect leptin pathways by opening KATP channels, and also to…
JUNE 2021 - The International PWS Clinical Trials Consortium have produced consensus definitions and descriptions of the key behavioural features of PWS, with the aim of providing standardised measures for treatment studies. FPWR have produced the infographic to the right…
IPWSO's Clinical and Scientific Advisory Board have produced some excellent new guides for doctors and health practitioners to aid the medical evaluation of patients. They provide an overview of the most common and serious medical issues affecting people with PWS…
At the end of May, we enjoyed a weekend in Wellington attended by 12 of our tweens and teens with an accompanying parent. Many of these teens know each other quite well now as 'regulars' at these events, but it's…
NOV 2020 - It is known that side effects of psychotropic medications are often atypical in PWS compared to the general population, which is why a lower dose is often recommended to avoid the potential of adverse effects. This may…