Prader-Willi Syndrome Association on behalf of PWS Research and PWRFA

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 approximately 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 that lead to an unrelenting, intense, and uncontrollable 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, individuals living with PWS can also rapidly gain weight, reducing life expectancy because of their increased vulnerability to the health risks associated with morbid obesity. This cruel syndrome necessitates lifetime dietary restriction to remain healthy, while at the same time disregulating appetite so that those living with the syndrome may perpetually experience sensations of extreme hunger or desire to eat.

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

All funds raised through this page will go towards a PWS research project or organisation (PWRFA). 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