Grandparents of Prader-Willi Syndrome Children

I came to be the grandmother of a child with Prader-Willi Syndrome through marriage, and little did I know at the time what a special grandson Reagan was going to be.  When I look at him, I do not see a child with PWS, but rather I see Reagan, a very special young man. I […]

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by Kathy Clark, Medical Coordinator Body temperature regulation is a challenge for people with PWS. They can easily become overheated, especially during infancy and childhood. Here are some great ideas to help you be safe when the thermometer rises. Outdoor activities should be planned for the cooler mornings, rather than sunny afternoons or the heat […]

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Ask The Dietitian

Announcing the very first installment in our “Ask the Dietitian” series!! In this blog series, Hannah Stahmer, Registered dietitian at the University of Florida answers your questions about feeding your child with PWS! Would you like to see your question answered in an upcoming installment? Log into Facebook ,visit , and ask your question […]

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Grayson’s Story

When Grayson was born, I remember being shocked that he had a headful of tiny, dark ringlets of hair. I wasn’t the only one; His nurses and visiting family and friends always made such a fuss over his curls. They were unexpected. And beautiful.   Weeks later, after an extended stay in the NICU and […]

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The Night we told Ryan he has Prader-Willi Syndrome

When is it the right time? At what age? At what cognitive level?  Will he even understand?  Will it make him more anxious? (Because EVERYTHING does.) Will he just perseverate on it and talk about it over and over and over?  Or will it bring relief—as in “oh, now I understand why I talk about […]

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A Dad’s Love

I’m not much of a Facebook person, in fact other than a few pictures over the years I’m pretty sure I’ve never actually written anything. I’m not much of a writer either. The last time I wrote this much I was probably back in college and that was double spaced in 14.5 font in order […]

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“Kicking The Can” with PWS

Written by: Sara Grosso For the last few months I’ve focused on modeling an active lifestyle and healthy eating choices for Grayson. Running is beginning to become a habitual part of my daily routine. The length and route of each run depend entirely on what kind of “adventure” takes place between the hours of 5:00 […]

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The Confusing World of Growth Hormone Insurance Coverage and Denials

The Confusing World of Growth Hormone Insurance Coverage and Denials – Kathy Clark, PNP, PWSA (USA) Coordinator of Medical Affairs   It may feel like insurance companies are the enemy when they deny a medication that we feel is so important to our children. There are some complex explanations that I will list here that […]

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