Category Archives: Prader-Willi Syndrome Association (USA)

Janalee Heinemann on Therapeutic Development and Rob Nicholls Webinar

Follow-up to Dr. Rob Nicholls webinar Dr. Nicholls did a wonderful job on describing the genetics of PWS and his involvement with some of the major breakthroughs in this area. We are very fortunate to have him on our PWSA … Continue reading

Posted in International Prader-Willi Syndrome Organization, Prader-Willi Syndrome Association (USA), Prader-Willi Syndrome Awareness, Research, Uncategorized | Leave a comment

Free Resources – Getting Ready For School Webinar, Slides and Charts

Dear PWSA (USA) Friends and Families, If you attended last weeks Webinar on “Getting Ready For School” Presented by Michelle Holbrook, Heather Molzer and Kate Beaver, thank you so much for attending and participating in a great Questions and Answers … Continue reading

Posted in Advocacy, Prader-Willi Syndrome Association (USA), Prader-Willi Syndrome Awareness, PWS Best Practice Guidelines, Support | Tagged , , , , , , , | Leave a comment

Tips For Teachers presented by Elizabeth Roof, M.A.

We are happy to present a brand new resource. A PWSA (USA) video with Elizabeth Roof presenting Tips for Teachers which is available on YouTube.  This fantastic resource for teachers has two parts: The Video which you can view here. A related Tool Box for Teachers which … Continue reading

Posted in Advocacy, Prader-Willi Syndrome Association (USA), Prader-Willi Syndrome Awareness, PWS Best Practice Guidelines, Support | Tagged , , , , | Leave a comment

From Emotions to Advocacy

“Effective advocacy comes from research, planning and preparation.  Successful advocates know that is important and what is not worth fighting about.  When you finish this book, you will have acquired the knowledge and skills you need to be an effective … Continue reading

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NEW! Elementary School Power Point Creating understanding is one of the keys to developing a more welcoming and successful classroom environment for students with PWS. Rob and Debra Lutz, parents of Isabella, created this PowerPoint to promote understanding and awareness … Continue reading

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Georgia PWSA Retreat

GA Assoc. for PWS is pleased to offer families an opportunity to get together for a relaxing weekend of fun and support. This year’s retreat will be held at Simpsonwood Retreat Center in Norcross, GA. Programs begin on Saturday 8/11/12 … Continue reading

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We Put The Fun in Fundraiser!

It is January 2012, and whenever the calendar page is turned to a new year, the fresh start brings an upsurge of hope and excitement.  This is the feeling here in the “bricks and mortar” heart of the PWS community, … Continue reading

Posted in Prader-Willi Syndrome Association (USA), Prader-Willi Syndrome Awareness, Prader-Willi Syndrome on the Move | Tagged , , , , | Leave a comment

PWS Best Practice Guidelines Now Available!

In many ways, creating useful resources to support the quality of life and care of people with Prader-Willi syndrome (PWS) is one of the most important ongoing tasks of PWSA (USA).  Visitors to our office are often impressed by the size … Continue reading

Posted in Caregiver Conferences, International Prader-Willi Syndrome Organization, Prader-Willi Syndrome Association (USA), PWS Best Practice Guidelines, PWSA (USA), Resources | Tagged , , , , | Leave a comment

Awareness Doesn’t End With May!

With the end of Prader-Willi Syndrome Awareness Month in May it is a good time to remember that promoting Prader-Willi syndrome awareness– like supporting people living with PWS and their families -is important every single day of the year.  So, even as our first … Continue reading

Posted in National Conference, Prader-Willi Syndrome Association (USA), Prader-Willi Syndrome Awareness, Prader-Willi Syndrome on the Move | Tagged , , , | Leave a comment