The recent webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now available. This webinar provides important information about PWS clinical trials including: what to expect when participating in a clinical trial, what questions you should ask, and how to get the information you need to decide if […]
By Lori Moline After a long, harsh Minnesota winter, the sounds of birds, and the sight of greenery and flowers are like a transfusion of hope- That’s why one of our family’s favorite activities is the annual trek to the local greenhouse and plant store. This year, with everyone else busy with other things, Sophie […]
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 […]