The PWSA (NZ) is fundraising to support the research programme of The Foundation for Prader-Willi Research. www.fpwr.org
The PWSA (NZ) provides support to people who have PWS and their families, but the challenges of PWS can only be truly eliminated through research. Currently, there is no cure.
PWS is a complex genetic disorder resulting from an abnormality of the 15th chromosome and affecting approx 1 in 16,000 births.
PWS can cause a wide spectrum of symptoms including developmental delay, cognitive and behavioural challenges. Individuals with PWS also lack normal hunger and satiety cues which lead to a preoccupation with food or insatiable appetite. Food seeking behaviours are common and due to hypotonia (low muscle tone) and an altered metabolism, weight gain can rapidly occur. Without a controlled diet, individuals with PWS become morbidly obese. Episodes of overeating can also cause life-threatening illnesses, such as stomach rupture.
These complications mean that people with PWS are rarely able to live an independent life. There is promising research providing hope that this can change and some of the challenges faced by people with PWS and their families will be eliminated.
All funds raised through this page will go towards PWS research. If you would prefer to raise funds to support the services of the PWSA(NZ) to help those affected by PWS in New Zealand, please see our other page on Givealittle by clicking this link: https://givealittle.co.nz/org/pwsasupport
We aim to enhance the lives of those with PWS by providing support to families, advocating for people with PWS and increasing public awareness and understanding. We provide resources and training courses for families, educators and residential providers, and we bring families together for support.