Freya’s Spotlight on Hope: The Climb
Contributed by Anne Fricke, mom to Freya, living with PWS Freya’s 6th grade class started the year studying volcanoes. Part of the learning experience was to travel to Lassen Volcanic National Park for a 5-day camping trip with arduous hikes and days full of activity. To say I had concerns is an understatement, but she...
Harmony Biosciences Reveals Encouraging Data from Phase 2 Pitolisant Study in PWS Patients
Harmony Biosciences has presented new secondary endpoint data concerning the use of pitolisant, an investigational drug, for the treatment of excessive daytime sleepiness (EDS) in Prader-Willi syndrome. According to a recent press release Harmony Biosciences released, the Phase 2 signal-detection study showed improvements in behavioral disturbances, especially in the higher-dose pitolisant group, as well as...
Halloween Fun for Everyone
Children, and many adults, look forward to Halloween with great anticipation. Bags full of sugary treats, scary decorations, and the thrill of trick or treating with friends and family: what could be more fun? But what do you do for Halloween when your loved one has Prader-Willi syndrome? Can they safely participate in the festivities?...
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.