Tag Archives: Prader-Willi Syndrome Association (USA)

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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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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Flu Season is Here — What Should We Do?

Flu Season is Here — What Should We Do? By Janalee Heinemann – Director of Research & Medical Affairs, PWSA (USA) Here are some questions that have come to me at PWSA (USA) and answers from members of our Scientific … 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

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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

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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

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Welcome to PWSATODAY

In this ongoing blog, we will share with you what’s happening at PWSA (USA) today including ideas for spreading awareness, important information on resources and strategies for supporting people living with Prader-Willi syndrome (PWS), encouragement for families raising a child … Continue reading

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