Prader-Willi Syndrome Association on behalf of FPWR for PWS Research.

The challenges of PWS can only be truly eliminated through research. Currently, there is no cure.

PWS is a complex neurodevelopmental genetic disorder resulting from an abnormality of the 15th chromosome, affecting approx 1 in 16,000 births. It causes a wide spectrum of symptoms which include complex medical issues, developmental delays and behavioural challenges. Individuals living with PWS also develop hyperphagia - a lack of normal hunger and satiety cues which lead to an unrelenting and intense drive to consume food. This food seeking behaviour has the potential to create life threatening situations, such as choking or stomach rupture, if an unsupervised episode of binge eating occurs. Due to hypotonia (low muscle tone) and an altered metabolic profile, people living with PWS will also rapidly gain weight without supported dietary restrictions and controls, shortening life expectancy due to an increased susceptibility to the health risks associated with morbid obesity.

These complications mean that people living with PWS will always require support to manage their food intake and participate in food environments, which imposes severe limitations on many aspects of life. There are several promising areas of research providing hope that some of these challenges can be alleviated and that people living with PWS in the near future will be able to live fuller and more independent lives. With your help, PWS research could transform lives.

All funds raised through this page will go towards a PWS research organisation. If you would prefer to raise funds for the PWSA(NZ) who provides support and advocacy services for those affected by PWS in New Zealand, please see our other page on Givealittle by clicking this link: https://givealittle.co.nz/org/pwsasupport