Important Update for the PWS Community: HERO Phase 3 Trial for ARD-101 Voluntarily Paused
We would like to share an important update from Aardvark Therapeutics. Aardvark has announced a voluntary pause of the Phase 3 HERO clinical trial, which is evaluating ARD‑101 for the treatment of hyperphagia in people with Prader‑Willi syndrome. The decision to pause the trial is based on reversible cardiac observations identified in a non-PWS, separate healthy...
Do You Have a Skill That Could Help Strengthen PWSA | USA?
PWSA | USA is built on the dedication of families, caregivers, and supporters who believe in advancing care, advocacy, and resources for individuals with Prader-Willi syndrome. In addition to lived experience, the organization relies on professional expertise to remain strong, sustainable, and forward-thinking. This is an opportunity not only for parents and caregivers, but also...
PWSA | USA and Soleno Therapeutics Take PWS Awareness to the Super Bowl
We are thrilled to share that PWSA | USA has partnered with Soleno Therapeutics on an exciting new awareness initiative that will be featured during this year’s Super Bowl – an ad in the Super Bowl printed program! The powerful message — “No end zone. No final whistle. Just goal posts that keep moving.” — brings...
In Loving Memory of Fausta Deterling, Co-Founder of PWSA | USA
We are deeply saddened to share the passing of Fausta Margaret Deterling, co-founder of the Prader-Willi Syndrome Association, who passed away peacefully on November 23, 2025, at the age of 94. Fifty years ago, alongside her husband, Gene, Fausta helped create and build PWSA | USA (then known as Prader-Willi Syndrome Parents and Friends). At...
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.
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.
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.
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.
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.