New PWS Children’s Book Now Available for Pre-Sale!
We are excited to share that a new children's book centered around PWS is now available to pre-order! It Starts with Hello: Katie's Story about Prader-Willi Syndrome was written by Destiny Pacha, Ed.D., who has worked in the public education system for more than 20 years. The story follows Katie and her companions as they...
Acadia Pharmaceuticals has Announced the Initiation of its Phase 3 Study for Nasal Carbetocin to Treat Hyperphagia
This week, Acadia Pharmaceuticals announced the initiation of its Phase 3 COMPASS PWS study! This study focuses on evaluating the efficacy and safety of carbetocin nasal spray (ACP-101) for treating hyperphagia in Prader-Willi syndrome. The COMPASS PWS trial is a 12-week, double-blind, randomized, placebo-controlled global Phase 3 trial, with approximately 170 participants aged five to...
Adoption Spotlight: 9-Year-Old Boy Living with PWS in Philadelphia is Seeking a Loving Foster Family
Kyle (not his real name) is a delightful, and very social, 9-year-old boy with PWS and related conditions – including hypothyroidism, obstructive sleep apnea, morbid obesity and albinism – who is in need of a loving foster family. He currently resides in a group setting outside of Philadelphia, PA where, with the benefit of structure,...
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.