Tweens and Teens Weekend 2021
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…
Pharmacodynamic gene testing should be considered before initiating pharmacotherapy in PWS
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…
Leadership and Social Weekend for Adults Living with PWS 2020
We invited our adult members with PWS to a Leadership and Social Weekend which was held Oct 16th - 18th 2020, at The Surrey Hotel in Auckland. The programme was aimed at developing advocacy and leadership skills and enabled us…
Top-line phase 3 results announced for Carbetocin trial – positive results at low dose
AUG 2020 - Oxytocin (OT) is a naturally occurring hormone released from the hypothalamus in the brain. It is associated with maternal care, bonding, feeding in infancy, social cognition, OCD, anxiety and appetite control. Carbetocin is an oxytocin-like drug which is…
PWSA Family Camp, Taupo – Feb/March 2020
Just a couple of weeks before our world changed momentously with the impact of Covid-19, we were able to enjoy a sunny weekend together on the alluring shores of Lake Taupo. It was the perfect site for our family camp,…
Julia and Dane interview Dr Jennifer Miller at IPWSO 2019 Conference
Whilst attending the IPWSO conference in Cuba, Julia and Dane Fuller, from New Zealand, were very fortunate to be able to interview expert endocrinologist, Dr Jennifer Miller. The interview contains useful information for families as Dr Miller discusses growth hormone…
Young Families Weekend – Nov 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…
Accelerated ageing in PWS
NOV 2019 - With better management, people with PWS are living longer today, but the number of people known to our Association aged over 50 years is still relatively small. There is hope that this will change in the future…
GABA – a new potential therapeutic target for challenging behaviour
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…
Teens Weekend – May 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…