3+ day, 6+ hour ago   (612+ words) Japanese researchers find no direct link to sensory issues, IQ, or genetic subtypes Written by Steve Bryson, PhD | Aug. 20, 2026 Skin picking among people with Prader-Willi syndrome (PWS) varies widely but is not driven by general behavioral problems, sensory processing difficulties,…...

1+ week, 3+ day ago   (801+ words) Statement addresses potential risks of Vykat XR for treating excessive hunger Written by Marisa Horak, MS | Aug. 13, 2026 A trio of advocacy groups have come together to help families understand safety risks associated with Vykat XR (diazoxide choline), an oral treatment…...

2+ week, 3+ day ago   (700+ words) Study: Method may offer alternative to radiation-based scans Written by Steve Bryson, PhD | Aug. 6, 2026 A simple ultrasound measurement of the calf muscle can help identify low muscle mass in people with Prader-Willi syndrome, offering a potential alternative to radiation-based scans,…...

2+ week, 5+ day ago   (230+ words) Running Our Own Race —Trevor Dykes Prader-Willi Syndrome News Running Our Own Race —Trevor Dykes Trevor (he/him) lives in Columbus, Ohio, with his husband and their two children, Emerson and Ellis; both live with Prader-Willi syndrome, and one is…...

3+ week, 3+ day ago   (649+ words) Written by Margarida Maia, PhD | July 30, 2026 Children with Prader-Willi syndrome (PWS) have different combinations of cognitive and emotional difficulties, and while families experience similar caregiving burden regardless of their child’s profile, understanding these differences may help provide more personalized support…...

1+ mon, 1+ week ago   (541+ words) We've thrown out the expectations, and are meeting our kiddos where they are Written by Trevor Dykes | July 20, 2026 We’ve adopted a family motto: “Run your own race.” On a recent weekend, we celebrated two wins! A current focus for our…...

1+ mon, 1+ week ago   (684+ words) Small trial shows it prevents breathing disruptions better than medical air Written by Andrea Lobo | July 16, 2026 Supplemental oxygen is more effective at easing brain-related breathing disruptions during sleep for infants with Prader-Willi syndrome (PWS) than medical air, a small clinical…...

1+ mon, 1+ week ago   (664+ words) A cosmic feeling led my husband and me to Emerson and Ellis Written by Trevor Dykes | July 13, 2026 Four years ago, my husband, Jamie, and I had never heard of Prader-Willi syndrome (PWS). We didn’t know it existed. And we certainly…...

1+ mon, 2+ week ago   (665+ words) Less severe food-related behavioral problems also a factor, researchers say Written by Lila Levinson, PhD | July 9, 2026 In people with Prader-Willi syndrome (PWS), younger age, a disease-causing genetic deletion, and less severe food-related behavioral problems are significantly associated with better health-related…...

1+ mon, 3+ week ago   (624+ words) Families saw lasting improvements in both uncontrollable appetite and behavior Written by Marisa Wexler, MS | July 2, 2026 Long-term treatment with Vykat XR (diazoxide choline) safely provides lasting relief from the uncontrollable hunger and behavioral struggles associated with Prader-Willi syndrome (PWS), according…...