HOUSTON — January 22, 2018 — Nexus Health Systems is excited to announce the restart of their national Changes Health and Wellness program at Nexus Children’s Hospital, on the west side of Houston. Reopening on January 15, the program offers support and treatment for patients with Prader-Willi Syndrome (PWS), a rare genetic disorder that affects learning […]
A Mother’s Experience By Katie Moureau My son Cade is three years old; and has been on oxygen since he was 4 months old. This year started out with a bang! One early winter morning, Cade’s pulse ox started beeping. By 5am it was alarming frequently as he was unable to maintain his oxygen levels […]
Research is one of PWSA (USA)’s Five Pillars of Support and also a vital component to the treatment of Prader-Willi syndrome. Thanks to the work of a dedicated PWSA (USA) board member, we can share with you a compiled list of upcoming PWS drug trials. Summary of Active Clinical Trials for Prader-Willi Syndrome Hyperphagia It […]
GRAND FORKS, N.D. — As soon as those two lines appear on a pregnancy test, thoughts start pouring in: what will my child’s life be like? Will it be a boy or girl? Will they grow up to be an astronaut? Find the cure for cancer? What will it be like being new parents? Steph […]
A few days ago, I was chatting with a fellow special needs mama when she mentioned that there was a conference on the other side of the country for the condition her daughter has, but she wasn’t sure if she should go. It took everything in me to not tell, “WHAT?! ARE YOU NUTS?!” Instead, […]
The holidays are almost upon us! For a lot of us, that means spending extra time with extended family. In my case, my three siblings, their families and my family are all converging upon my parents’ house in Colorado. This should be a point of excitement and joy. And, for the most part, it is! […]
One night last week, I had a moment where, for the first time in his 18 months of life, I thought, “I wish Henry didn’t have to have Prader-Willi Syndrome.” It was a guilty thought, and was accompanied by more than a few tears. I’m not sure if they were tired tears, third-trimester tears or […]
Many individuals with PWS have behaviors and tendencies that are like those seen in autism spectrum disorders (ASD). Repeating questions, the need for “sameness”, and repetitive behaviors – these things are so common in PWS and in autism. The relationship between PWS and autism was researched recently by the PWS experts at the Vanderbilt Kennedy […]