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…PWS. Boundaries keep us all “on the same page”. Let’s remember how people with PWS think… For most people with PWS, there exists constant, life-long anxiety from choices to be made, the things they hear and see, the speed at which decisions have to be made, the constant drive to eat and in many cases, the desire to be “the same” as others. As well, most people with PWS are concrete thinkers! The words you…

…to redirect to a safe topic that everyone knows is true, like “Tell me about your sports memorabilia collection” or “Tell me about the first time that you went to a rugby game?” Or, if in a residential or school environment, teach staff an intervention “That’s an interesting story, but I’ll have to check with your mom.” or, “It must make you feel important to think that you’re related to a sports star.” It’s not…

…been held in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada, Cuba and most recently Ireland. In 2025 we are delighted to be returning to the USA. If your association is interested in hosting a future conference do get in touch. < Back to News & Events International Community IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united…

The Jean Phillips-Martinsson Fund In 2020 and 2021, Jean Phillips-Martinsson, IPWSO’s founder and Honorary President, presented substantial and very generous donations to IPWSO in memory of her son, Anders, and her husband, Sven.   Jean Phillips-Martinsson Jean’s son, Anders (top picture with Jean on the right), who was diagnosed with PWS at the age of 14 in Sweden, died unexpectedly in July 2019 at the age of 49. Jean’s husband, Sven, died 11 years previously….

…them for having PWS. Their environment is key. Starvation Syndrome To understand the importance of this drive to eat, try to look at PWS as a ‘starvation’ syndrome (behaving as if you were starving) rather than an over-eating one. Because of the dysfunction in the hypothalamus, there is no on/off mechanism that tells the brain, “I’ve eaten enough”. What happens instead is that the brain (hypothalus) keeps telling the body, “you’re starving, you need food”,…

…to do the same. For nearly twenty years, Mary K. co-chaired PWSA | USA’s Provider’s Day. Having had the privilege of being one of the first Co-chairs of IPWSO’s Professional Providers and Caregivers Board at its inception at the conference in Taiwan, Mary K. has coordinated and participated in numerous workshops internationally. Mary K. has authored the chapter on Residential Care for Adults with Prader-Willi Syndrome in the “Management of Prader-Willi Syndrome”, 3rd edition and…