Family Support
PWSA (USA) supports individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources. We educate medical providers, educators, and professional care givers about PWS and how to best support individuals with the syndrome.
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Research
PWSA (USA) seeks to support research projects with the potential for immediate and high impact for the PWS community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal.
Advocacy & Awareness
Raising awareness and effective advocacy are critical to effecting positive change in and for the Prader-Willi syndrome community. PWSA (USA) is committed to empowering individuals with PWS and their families with resources and tools such as the Public Policy Action Center.
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Prader-Willi Syndrome Medical Alert Booklet
Latest Articles
Socializing for Adults with PWS During the Pandemic
One of the many areas impacted by COVID-19 virus has been the ability of adults with Prader-Willi syndrome (PWS) to socialize. As there are many studies that outline the emotional challenges and decline that social distancing is causing, it is important to explore and discuss opportunities for adults with PWS to create new social...
Home Schooling: How to Pick Curriculum: What to Use, Where to Get, How to Implement (Part 4 in a Series)
There are hundreds of different options when it comes to picking curriculum which can make it both exciting and overwhelming. Hopefully by the time you’re done reading this you’ll feel at least a little more prepared. As with all the articles in this series, we’ll discuss both distance learning through your school and traditional...
Sibling Caregivers
Siblings often make excellent caregivers for their sibling with Prader-Willi syndrome (PWS) because they grow up around PWS, understand the realities of the syndrome, and are trained throughout their lives to take care of their sibling. Therefore, siblings seem to be a parent’s perfect choice to tend their family member with PWS and often...
Running for Research
PWSA | USA is happy to announce its partnership with Running for Research, a diverse group of runners dedicated to raising funds for the Prader-Willi Syndrome Research Fund at the University of Florida and Dr. Jennifer Miller’s work to identify effective treatments for children and adults with Prader-Willi syndrome (PWS). Since its founding in...
Latest Update on the Genotropin Mini Quick shortage from Pfizer Pharmaceuticals
Earlier this year, Pfizer Pharmaceuticals experienced a temporary interruption in the supply of the Genotropin 5 and 12mg cartridges, as well as all Mini Quick devices. According to the Commercial Brand Lead for the US, Michael Harris of Pfizer Pharmaceuticals, the interruption was due to a manufacturing issue in fall of 2019 at the...
Soleno Therapeutics Announces Top-line Results from Phase III Trial of DCCR for Treatment of Prader-Willi Syndrome
Though the study did not meet statistical significance for Primary Endpoint, significant improvements were seen in a prespecified subgroup with severe hyperphagia. Significant positive changes were also seen in two of three key secondary endpoints. Interim analysis of Ongoing Extension Study (C602) showed further reductions in hyperphagia of 48% after six months of DCCR...
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.