Menu

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 […]

read more

Diagnoses and characteristics of autism spectrum disorders in children with Prader-Willi syndrome

Many individuals with PWS have behaviors and tendencies that are like those seen in autism spectrum disorders (ASD). Repeating questions, the need for “sameness”, and repetitive behaviors – these things are so common in PWS and in autism.  The relationship between PWS and autism was researched recently by the PWS experts at the Vanderbilt Kennedy […]

read more

Who’s Harder To Raise Boys or Girls?

By Diane Seely, New Parent Support Coordinator Snips and snails and puppy dog tails… sugar and spice and everything nice… Parenting is hard work. It’s heart wrenching, overwhelming and joyful all at once. Lately I’ve been pondering whether raising a son with Prader-Willi Syndrome is more difficult than raising a daughter with PWS? The frustration […]

read more

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 […]

read more

TOO DARN HOT!

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 […]

read more

Ask The Dietician

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 https://www.facebook.com/Prader-Willi-Syndrome-Association-Ask-the-Dietitian-343199949408216/ , and ask your question […]

read more

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 […]

read more

Save The Date: PWSA (USA)’s Medical and Scientific Conference

Save The Date PWSA (USA)’s 34th National Convention 29th Medical & Scientific Conference – November 16th, 2017 November 15 – 18, 2017 Caribe Royale | Orlando, Florida PWSA (USA) Medical & Scientific Conference CME’s Available for Attendees Key Note Speakers: AM Topic– Prader-Willi Syndrome Medical Overview – Advancements & Treatments Jennifer Miller, M.D. Endocrinologist Associate Professor […]

read more
Showing 1 to 8 of 108 results
  TOP