Category: Blog

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...

Lawmakers Review Several Legislative Proposals Intended to Accelerate Innovation of Therapies, Including STAT Act

On Thursday, March 17th, the House Energy & Commerce Subcommittee on Health held a hearing regarding The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight. This hearing explored a number of legislative proposals intended to accelerate innovation of therapies, while ensuring appropriate levels of oversight, including H.R. 1730, the Speeding Therapy Access Today...

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