PWSA | USA and FPWR will host a combined Community Conversation on Tuesday, November 9th at 8:00 p.m. EST. PWSA | USA CEO Paige Rivard and FPWR Director of Research Programs Theresa Strong will discuss the outcome of the November 4th FDA Advisory Committee Meeting regarding LV-101 carbetocin nasal spray. This will serve as an...
Due to the generosity of our donors, your donation to the Angel Drive will now be matched dollar for dollar up to $60,000. Help us reach our goal of raising $120,000 by December 31, 2021! The 2021 PWSA | USA Angel Drive kicks off TODAY and we are counting on YOU to be our partner...
The 2021 Angel Drive Campaign kicks off November 1st and we're counting on YOU to be our partner in hope! Every year, more than 2,000 individuals and families turn to PWSA | USA to find help when they need it most. Ours is the only organization that provides the comprehensive support, tools, and resources families need...
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When: October 8, 2021 | 11:30 am EST Advocating for treatments for PWS has never been more important! Join this session co-hosted by PWSA | USA and FPWR to learn how you can make the greatest impact with the FDA. It is vital the FDA understand our community’s needs, preferences, and experiences. In this session,...
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We are excited to offer a special webinar Monday, August 9, 2021 at 7:30 p.m. EST on homeschooling and PWS. The COVID-19 pandemic forced parents to make difficult decisions regarding their children’s education. Join Julie Casey and Danielle Warmuth to learn from veteran homeschoolers about curriculums, services, and socialization. REGISTER IN ADVANCE HERE __________________________________________________________________________________________________________________ ...
FOR IMMEDIATE RELEASE: January 14, 2021 Sarasota, Florida: Prader-Willi Syndrome Association | USA (PWSA | USA) is pleased to announce its upcoming 36th National Convention is moving to an all-new virtual format. Due to the ongoing health concerns brought forth by the COVID-19 pandemic, the organization will provide members of the Prader-Willi syndrome community with a variety...
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 2018,...
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.