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.