by Shelly Cordner | Sep 26, 2025 | Blog
Francie Thornton 1984-2025 We were very sad to receive the message a few weeks ago that Francie Thornton, daughter of Linda and Nick Thornton, New Zealand (NZ) had died aged 40. Francie was the youngest of three sisters and had the diagnosis of PWS at the age of four...
by Shelly Cordner | Apr 29, 2025 | Blog
This month we held an important meeting, inviting PWS Associations and stakeholders from around the world to discuss the potential for global access to VYKAT™ XR (DCCR) for treating hyperphagia in people with PWS. The session focused on the process of bringing...
by Shelly Cordner | Mar 27, 2025 | Blog
Beat the Heat in Arizona! As we count down the days to the United in Hope: International PWS Conference in Phoenix, AZ, our excitement at gathering with many families from the PWS community grows! We’ll be spending time with old friends, making new ones, and...
by Nora McNairney | Sep 13, 2024 | Blog
Jacob Evan Yashinsky-Zavitz lived his life with enormous courage and humour, dealing every day with the intense hunger known as hyperphagia that accompanies Prader-Willi Syndrome. In creating a rich and meaningful life for himself, he also became a wise advocate for...
by Nora McNairney | Jun 24, 2024 | Blog
Our President’s Reflections I am of an age and a generation where blogs and social media remain a bit of a mystery. I also remember a ‘pre-google era’ when the local library or the school library were the main sources of information – yes there...
by Nora McNairney | Jun 24, 2024 | Blog
As we embark on an new era at IPWSO, Marguerite Hughes, Chief Executive Officer, reflects on her role and looks forward to IPWSO’s continuing growth and success. In 2025 I will be stepping down as IPWSO CEO. I will miss it greatly, in large part because every...
