Movement and Motivation
We know the importance of exercise for our loved ones with PWS (as well as caregivers if you read last month’s blog on Exercise, Movement, and Mental Health). There are many ways people with PWS can move their bodies to experience the benefits of exercise. Still, sometimes, we have to get creative to get our...
Ask Nurse Lynn: Cataplexy
Question: My daughter is 12 (deletion). She was never officially diagnosed with cataplexy, but when she was younger there were obvious moments of cataplexy like behavior (usually if she was tired and laughing.) Is it necessary to get an official diagnosis of cataplexy, if so, how is that done, and is it something that people...
PWSA | USA Now Hiring for Director of Accounting, Development Specialist Positions
Position: Full Time Development SpecialistLocation: Remote Do you have a passion for cultivating relationships and supporting those affected by PWS? Here is your opportunity! PWSA | USA is on the lookout for a dynamic individual to join our growing development team! As the Development Specialist, you’ll play a crucial role in special projects, grassroots support,...
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.