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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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Weathering the Storm – A Mother’s Story

Written by: Sara Grosso My name is Sara Grosso. I am the mother of Grayson Grosso, who was diagnosed with Prader-Willi syndrome at just one month after birth. He is a thriving two-and-a-half-year-old boy now and it has taken me nearly his entire life to put his story into writing, because, frankly, it makes me […]

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