Category Archives: Uncategorized

PWSA (USA) School Times March 2016

Evan’s Take Exciting School Advocacy Updates from PWSA (USA) Welcome to our first 2016 issue of School Times – rebranded and expanded to serve you better. This issue is chock full of great information.  But first, two exciting announcements! The … 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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FDA Meeting with Prader-Willi Syndrome Representatives

We have just come back from a meeting we had in DC representing Prader-Willi syndrome as patient advocates with the FDA. With several drugs in the pipeline that could potentially be significantly helpful to PWS, we want to make sure … Continue reading

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Jennifer’s Story

Our beautiful daughter, Chelsea, was born September 19, 2013, on her late-grandmother’s birthday. It was a very special day. As the obstetrician was delivering her, he said, “Look at all the blonde hair!” In an instant I knew something was … Continue reading

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A Book of Bullies by Katherine Stanley

Author Katherine Stanley discusses her book, A BOOK OF BULLIES. Born with a genetic condition, Prader-Willi Syndrome, Katherine has been the victim of bullying. Her book puts the spotlight on the hurt and harm caused by bullying and calls for … 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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David Wyatt: The Wealth Of A Man

Evan Farrar and David Wyatt together last summer at the David Wyatt Special Education Advocacy Training (WSEAT) in Sarasota David A. Wyatt, 82, of Siesta Key Florida, died peacefully April 9, 2014. He was born in Amarillo Texas. He was … 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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