Siblings often make excellent caregivers for their sibling with Prader-Willi syndrome (PWS) because they grow up around PWS, understand the realities of the syndrome, and are trained throughout their lives to take care of their sibling. Therefore, siblings seem to be a parent’s perfect choice to tend their family member with PWS and often become...
Category: Awareness
Home Schooling: But I’m Not a Teacher, How Can I Teach My Children? (Part 2 In a Series)
Did you used to be a teacher? You must need special qualifications to home school, right? Variations of this question come up frequently when I tell people I home school. The truth though is that no, I was not a teacher, and though I do have a graduate degree, I don’t have any special training...
Surviving Teletherapy
If you have a loved one who has Prader-Willi syndrome (PWS), you have no doubt tried some sort of teletherapy due to the Coronavirus pandemic. While some individuals have taken easily to this new way of interacting, many are finding it difficult. If your loved one falls in the latter category, a few suggestions are...
69 Years with Prader-Willi Syndrome and Still Strong
Contributed by PWSA | USA Alterman Family Support Counselor Kim Tula, MS, CSW Prader-Willi syndrome was first diagnosed in 1956; only 63 years ago. With supportive living and specialized care, we are now seeing individuals with PWS living longer and healthier lives. Susan Booth (Boothie) is one of those people. Susan was born March 18,...
A Massive PWS Awareness Campaign for Geneticists
PWSA (USA) had an awareness booth at the American College of Medical Genetics (ACMG) national meeting in Tampa Florida, March 8-12 2016. During this conference they had the first-ever symposium on a single syndrome (Prader-Willi syndrome) and had approximately 2,000 geneticists and genetic counselors attending. The symposium lasted 2 ½ hours with five speakers on PWS. What huge...
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.