PWSA Blog

Early Intervention: IDEA Part C

Contributed by PWSA | USA's Family Support Director Stacy Ward PWSA | USA often receives questions about early intervention, the difference between Individualized Education Programs and Individual Family Support Plans, and how to qualify for each from parents. Part C (Early Intervention) of the Individuals with Disabilities Education Act (IDEA) was established in 1986 by...

2022 PWSA | USA Volunteer Summit Recap

Contributed by PWSA | USA Community Engagement Coordinator Dorothea Lantz If there is one word to describe the events of PWSA | USA’s first ever Volunteer Summit in Dallas, it would be magical. We had more than 30 of our dedicated volunteers in attendance for a Saturday filled with hope and ideas on how to...

It’s Teacher Appreciation Week!

Contributed by PWSA | USA Family Support Director Stacy Ward Would you be where you are today, without the teachers in your life who encouraged, inspired and believed in you?  I know I would not be.  I considered being a teacher – who does not love the idea of getting out of work by three...

Hyperphagia and How it Affects Learning

Contributed by Stacy Ward, MS Director of Family Support and Lynn Garrick, RN, BSN Medical/Research Coordinator Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder that affects multiple systems in the body. There are many symptoms of PWS, including hyperphagia, behavioral challenges, hypotonia, incomplete sexual development, cognitive deficits, metabolic dysregulation, and several more. Hyperphagia is...

National Siblings Day: Joe Gill

April 10, 2022 is National Siblings Day, a day where we take the opportunity to celebrate and recognize the amazing siblings in our PWS community. One sibling in particular is going above and beyond to raise awareness and funds for our rare disease community. Joe Gill, 22, will be running in the upcoming Boston Marathon...

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