Tag Archives: Prader-Willi Syndrome

Joe’s Mission for Prader-Willi Syndrome

On September 11, 2012, my baby cousin Siena was born. Shortly after, Siena was diagnosed with Prader Willi Syndrome (PWS), a rare genetic disorder that occurs in only 1 of 15,000 births. PWS typically causes low muscle tone, short stature, … Continue reading

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Season Greetings!

Season Greetings Everyone and A Happy New Year! “One of the most critical components of PWSA (USA) support is the medical coverage. Parents and professionals call daily with anything from a medical question to a serious medical crisis. Support and … Continue reading

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“When Your Baby Is In The Hospital NICU” New Resource

A new resource from Prader-Willi Syndrome Association (USA) for families who have just received a diagnosis and have a baby in the NICU We are very pleased to share with you this wonderful publication that will be a tremendous resource … Continue reading

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Free “Research For Prader-Willi Syndrome” Webinar Recording

Dear Friends and Families, If you attended Tuesday nights  webinar on “Research For Prader-Willi Syndrome and Rob Nicholls Ride For Research”, thank you so much for attending and participating in a great Questions and Answers session. The participation we received … Continue reading

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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

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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

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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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IPWSO Conference- A Story From A Self Advocate

To our PWSA (USA) families from the UK, Tomorrow starts our last day of the international conference in Cambridge, but I did want to let you know that the IPWSO conference hosted by PWSA UK has been a huge success.  … Continue reading

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Evan’s Take: The Lehigh University Special Education Law Symposium: Report 1

Prepared by Evan Farrar, M.A., PWSA (USA) Family Support Counselor Last week I represented PWSA (USA) and the PWS community at the Special Education Law Symposium sponsored by the College of Education at Lehigh University in Bethlehem, PA.  http://coe.lehigh.edu/law Participants … Continue reading

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Videos from PWSA (USA) International Hyperphagia Conference

Several of the world renown researchers who gave presentations at our International Hyperphagia Conference have given permission for us to put their presentation on our the PWSA (USA) web site and Youtube channel.  See these lectures by clicking on the … Continue reading

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