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Recording of Recent Webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now Available

  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 […]

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LivingHealthy with Prader-Willi Syndrome
: Cookbook and Nutrition Tips

To purchase this item, click here   Latham Centers recently published its first cookbook entitled LivingHealthy with Prader-Willi Syndrome: Cookbook and Nutrition Tips. Written for the Prader-Willi syndrome community, the cookbook is a complete resource for planning nutritious, delicious meals for individuals with PWS— and for tips and advice from experts in the field. The menu […]

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A Mother’s Day Gift

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 […]

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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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