Prader-Willi Syndrome : How Parents and Professionals Struggled and Coped and Made Genetic History
By: John Hernandez-Storr
Now available through PWSA (USA) — this amazing 256 page book gives never-before-told historical facts on the evolution of the medical world working to understand Prader-Willi syndrome (PWS) entwined with intimate, personal stories of the original PWSA (USA) pioneers. As the BlueInk review states, this book is “A seamless blend of case history, detective story, and medical mystery.” The author, John Hernandez -Storr, who is the father of a daughter with PWS, spent years doing personal interviews with many of the key PWS professional and parent pioneers.
The following is a review by Suzanne B. Cassidy, M.D., a world renowned PWS genetic specialist, editor of Management of Common Genetic Syndromes, and President of the International Prader-Willi Syndrome Organisation:
“A wonderful, eminently readable book about the impact, challenges and successes of living with and understanding Prader-Willi syndrome. Most impressive from my point of view, as a clinician and researcher who has observed and participated in the progress in our knowledge of Prader-Willi syndrome for more than three decades, is how clear and accessible are his descriptions of the scientific and medical progress it has undergone. Written with an audience of families and direct caregivers in mind, it is nonetheless scientifically accurate.
This is a book that can be a source of knowledge and inspiration for everyone who lives with or studies Prader-Willi syndrome, whether a parent or sibling, a care provider, a teacher, a doctor, or a scientist.“
John Hernandez -Storr has very generously offered to donate all of the proceeds for books sold through PWSA (USA) back to the Association.
Click HERE to purchase your copy!
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.