PWS Blog

May is Prader-Willi Syndrome Awareness Month

Posted: May 31, 2014 by The Children's Institute

May is Prader-Willi Syndrome Awareness Month. What month could be more appropriate to launch our new Center for Prader-Willi Syndrome Blog? Several times a year, our expert team members will share insights based on their experiences working with individuals with Prader-Willi syndrome.

For our first blog, we’re recapping some of the amazing things that took place in our program during this special month. To celebrate PWS Awareness this May, we’ve helped spread awareness and promote research about this syndrome that affects about one out of every 15,000 births. The Children's Institute is the only hospital-based site in the nation that offers treatment for children and adults with PWS.

We held a number of exciting PWS events for patients and staff throughout the month:

May 7

With fingers crossed that the rain would hold off, several of The Children’s Institute’s patients, recreational therapists, and staff went to the final game of the Pirates-Giants series. And the Pirates won! We must have brought them luck. The Children’s Institute is lucky too, to have the Pirates Charities as our teammate. Their generosity has raised nearly $285,000 over the past three years. This year, we received $40,000 from Clint Hurdle’s Wins for Kids, a program he continued when he joined the Pirates’ organization in 2010. Every season fans pledge a dollar amount for each Pirates’ win, and the funds are shared between Pirates Charities and The Children’s Institute’s Center for Prader-Willi Syndrome.

A special message from the Pittsburgh Pirates’ for our patients was posted on the Jumbotron.

May 8 - 9

We hosted our annual PWS Craft Sale. From mugs to magnets, paintings to picture frames, we had it all. Throughout the year in Occupational Therapy, our patients with Prader-Willi syndrome created a mountain of wonderful arts and crafts to sell in the main lobby of The Children’s Institute. Half the fun was making the gifts and the other half was selling them, raising almost $800 for our Center for PWS!

Some of the amazing crafts from the sale.

May 14

Every month at The Children’s Institute, our patients with PWS have the chance to shine at the Meet the Author event. With the help of speech/language pathologist Katie Hartman, they use various writing genres to express themselves and entertain an audience of fellow patients and staff. For PWS Awareness month, Meet the Author was bigger and better than ever, with staff members from many departments of The Children’s Institute in attendance to hear from our amazing patients. Meet the Author is always a big hit and we look forward to hearing from next month’s authors! One of our amazing authors is pictured on the right.

May 28

The final PWS Awareness Month activity for patients and staff members was a PWS Treasure Hunt and Outdoor Activity Day. We had corn hole, ladder golf, sun, smiles and perfect weather in our therapeutic garden. Patients spent the afternoon chasing down clues and engaging with staff and other patients by asking questions and providing fun facts about PWS. Because many of these patients do not see or interact with all of our staff on a regular basis, this event was special for everyone at The Children’s Institute!

Stay tuned for next month’s Center for Prader-Willi Syndrome Blog post!

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