The year 2025 marked an extraordinary period of progress, collaboration, and momentum for PWSA | USA’s Medical and Research pillar. One of the most historic milestones for the PWS community occurred in March 2025 with the FDA approval of the first medication specifically indicated for the treatment of hyperphagia in individuals with PWS. This landmark achievement represents decades of advocacy, research, and collaboration between families, clinicians, researchers, and industry partners. In response, members of the Clinical and Scientific Advisory Board (CSAB) worked swiftly to develop and publish a comprehensive Frequently Asked Questions (FAQ) document to help families, providers, and stakeholders better understand the medication, its role in treatment, and considerations for use.
The 2025 International PWS United in Hope Conference was another major highlight of the year. The Clinical and Scientific Program drew 413 attendees and featured more than 60 sessions focused on advancing care for individuals with PWS across the lifespan. Experts from around the world gathered to share emerging research, clinical best practices, and innovative models of care. The conference fostered meaningful collaboration among clinicians, researchers, caregivers, and advocates, reinforcing the importance of a multidisciplinary approach to PWS management. Feedback from attendees emphasized the value of both the depth of scientific content and the practical, real-world application of the information presented.
Research efforts also continued to expand. PWSA | USA’s Research Committee reviewed applications for our Clinical Scholarship Program, ultimately accepting one candidate and inviting a full grant proposal for further consideration. This program represents an important investment in developing the next generation of PWS clinicians and researchers, strengthening the long-term capacity of the field. Continued support for investigator-driven research remains a priority as new questions emerge around lifespan care, mental health, and evolving therapeutic options.
The Ask Nurse Lynn column remained a vital resource throughout the year, receiving an average of four to five inquiries per week from individuals and families across the globe. These questions – ranging from medical management to behavioral concerns – highlight the ongoing need for accessible, trustworthy information. In addition, the 24-hour support line continued to provide critical guidance to families navigating urgent medical and behavioral situations.
Finally, members of the CSAB continued to offer peer-to-peer consultations upon request. These consultations have proven invaluable, particularly for families and healthcare providers who lack access to local PWS expertise. By sharing knowledge and clinical experience, the CSAB plays a vital role in improving care, reducing isolation, and strengthening the global PWS community.
We look forward to even more advancements in PWS research throughout 2026!
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.