Tag Archives: PWS

Knowledge Is Power

It is said that knowledge is power.  This certainly is true for parents of students with PWS.  Knowing how to find and use information is an important special advocacy skill for parents.  Below is some information, from the Special Education … Continue reading

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Word of the Day: Complexity

The word of the day for me is complexity because each speaker at the Special Education Law Symposium makes a point of emphasizing the complexity of special education law and the special education system.  The reasons for this complexity are … Continue reading

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Agents of Change for Prader-Willi Syndrome

This week I am representing PWSA (USA) and the PWS community at the Special Education Law Symposium sponsored by the College of Education at Lehigh University in Bethlehem, PA.  Today the keynote address was given by Michael Yudin who is … Continue reading

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PWSA (USA) 2014 Grant Submission Information & Requirements

Prader-Willi Syndrome Association (USA) has been funding research grants for 31 years. We are pleased to announce the beginning of a new grant cycle to offer grant assistance for scientific researchers with an interest in improving the lives of those … Continue reading

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May Is Prader-Willi Syndrome Awareness Month

 It is officially Prader-Willi Syndrome Awareness Month!  May is a time for friends and families around the country to spring into action for Prader-Willi Syndrome. We can all make a positive difference in the lives of those living with PWS by becoming involved … Continue reading

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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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The First Ever School Times E-Letter!

  EVANS TAKE Welcome to the first issue of School Times!  The first regular publication to deal exclusively with PWS related school issues.  We hope as this bi-monthly e-letter evolves it will be an essential school resource for you and … Continue reading

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