Calling All New Englanders! Support PWSA | USA at the 14th Annual Hunter Lens Golf Tournament
Calling all New Englanders - Join the Lens family for a full afternoon of fun activities! The 14th Annual Hunter Lens Golf Tournament will take place Saturday, October 7, 2023, at 12:00 p.m. EST at the Back Nine Club (17 Heritage Hill Dr., Lakeville, MA 02347). Enjoy time with family and friends while participating in...
Transformative Tales: Empowering Families Dealing with Prader-Willi Syndrome Through Food Security
Contributed by Christopher Rich, Utah PWS Association Living with Prader-Willi Syndrome (PWS) presents unique challenges, particularly in managing food-related behaviors. The experiences of families dealing with PWS takes on an extra layer of complexity, because of the significance of food control and security devices in their lives. In the below excerpts, we dive into those...
Neuren Pharmaceuticals is Happy to Announce the First Site Participating in Their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is Now Open for Screening!
Important information regarding this exciting milestone: Rare Disease Research (RDR), located in Atlanta, GA, is now welcoming children with PWS and their families to their clinicfor screening into this trial. The duration of active treatment in this study is 13 weeks. In a preclinical study in animals, physiological and behavioral symptoms were normalized within six...
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.