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

  Auckland
Organisation page created in the Health category

The PWSA (NZ) is fundraising to support the research programme of The Foundation for Prader-Willi Research. www.fpwr.org

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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, but individuals with PWS also lack normal hunger and satiety cues which leads to a preoccupation with food. Food seeking behaviours are common, and due to having reduced muscle tone, 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. We hope that research can change this and eliminate some of the challenges faced by people with PWS and their families.

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

Organisation details

Aiming 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 carers, bring families together for support, and keep members informed of the latest developments in research.

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This organisation page was created on 04 Oct 2012.

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