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NEXUS CHILDREN’S HOSPITAL ANNOUNCES PROGRAM RESTART

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 […]

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Advocating for your child in the ER

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 […]

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Summary Of Active Clinical Trials For Prader-Willi Syndrome Hyperphagia

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 […]

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Family Thriving Despite Daughter’s Rare Chromosomal Disorder

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 […]

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Convention Connections: One Mother Shares How the PWSA (USA) Convention Helped Her and Her Family

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, […]

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Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs

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! […]

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Oklahoma 22nd Annual State Conference

This 22nd annual conference is an opportunity for our PWS community to come together for fellowship, education and fun. Topics include IEPs, Guardianship/Trusts/Wills, Department of Human Services resources and a panel of PW moms. Volunteers with the Bricktown Rotary will escort our PWS individuals through the Orr Family Farm during the conference. Please Click Here […]

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He’s Still Henry- Our Prader-Willi Syndrome Story

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 […]

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