Tag Archives: rare disease

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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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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