1. ISBN13: 9780060734404
2. Condition: NEW
3. Notes: Brand New from Publisher. No Remainder Mark.

Editorial Review :

The riveting true story of John and Aileen Crowley's race to find a cure for Pompe disease that inspired the movie Extraordinary Measures

With three beautiful children, a new house, and financial security, John and Aileen Crowley were on top of the world—until their two youngest children, fifteen-month-old Megan and five-month-old Patrick, were diagnosed with Pompe disease and given only months to live. Refusing to accept a death sentence, John quit his financial consultant job and invested his life savings in a biotechnology start-up to research the disease and find a cure. Battling scientific setbacks, conflict of interest accusations, and business troubles, John and Aileen would be tested to their limits as they valiantly fought, and succeeded, in finding revolutionary new treatment for the disease—offering hope to Megan, Patrick, and the many children and families affected by Pompe disease around the world.

The inspiration for the captivating film Extraordinary Measures, starring Brendan Fraser and Harrison Ford, The Cure is a remarkable true story of cutting-edge science, business acumen and daring, and one family's indomitable spirit.

Customer Review :

Page turner

Although this is primarily a human interest story, I was drawn to the narrative by the different dimensions that the author explored - business, family trials and tribulations, self doubt by John Crowley, marriage love and heart ache. Geeta Anand writes so fluidly and simply about a very complex story. I rarely read a book inside of a week, but I finished this in two days. Riveting.

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More business than science

This is a business book and not a scientific book, so I was a little disappointed.

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An extraordinary story of determination and parental love.

There is an old axiom that "God does not give you more than you can handle". But imagine living each day with the knowledge that two of your three young children have a rare and deadly disease that could claim their lives at any time......and there was no treatment available. That was the heartbreaking dilemma that John and Aileen Crowley were presented with and somehow had to deal with on a daily basis. Pulitzer-Prize winning reporter Geeta Anand chronicles the amazing story of the Crowley's epic struggle to keep their youngsters alive in "The Cure: How A Father Raised $100 Million--and Bucked the Medical Establishment--in a Quest to Save His Children". This is a compelling story that will grab your attention in Chapter One and simply never let go.

Now as you might have surmised from the rather lengthy title of this book John Crowley was not exactly "Joe Sixpack". John was a brilliant individual with a wealth of education. Over the years John Crowley had received a degree from Georgetown's School of Foreign Service, spent a year and a half at the Naval Academy, scored a law degree from Notre Dame and last but not least earned an MBA from Harvard Business School. John and his wife Aileen looked forward to a healthy and prosperous future. Aileen gave birth to their first child, a bouncing baby girl they named Megan on December 16, 1996. Just 15 months later the Crowley's discovered that Megan was suffering from an extremely rare neuromuscular affliction known as Pompe disease. People with Pompe fail to produce sufficient quantities of a particular enzyme and as a result there is progressive muscular weakness throughout the body. Most young children diagnosed with Pompe at that time did not live past the age of 5. To make matters worse, John and Aileen's third child Patrick, born in March of 1998 was also diagnosed with Pompe. Although several scientists and biotechnology companies were working on the problem there was still no treatment for Pompe. The clock was ticking and the lives of his kids were at stake. John Crowley was bound and determined to spearhead the effort to find a cure for Pompe. He and Aileen would go to extraordinary lengths to achieve their goal. This is what "The Cure" is all about.

Over the next few years John Crowley would dedicate all of his time, talent and treasure in a valiant effort to save Megan and Patrick. He worked tirelessly to raise funds to find a cure for Pompe and founded an organization known as the Children's Pompe Foundation. Ultimately he would become the CEO of a company called Novazyme, a biotech firm dedicated to finding a cure for Pompe and other related diseases. It was exhausting work that required literally every fiber of John's being. The extended battle to save their kids nearly cost John and Aileen their marriage. John's work required him to be away from home much of the time leaving Aileen to take care of three little ones.
While Aileen did have nurses to assist her at home every single day was fraught with danger. One wonders how John and Aileen managed to get through it all. When I think about the trivial things I get upset about it makes me feel ashamed.

"The Cure: How A Father Raised $100 Million--and Bucked the Medical Establishment--in a Quest to Save His Children" makes you stop and reflect about what is truly important in life. Despite enormous hardships John and Aileen Crowley proved to be more than up to the challenge. And in working so hard on behalf of Megan and Patrick the Crowleys also impacted other Pompe families around the nation who found themselves in the same boat. "The Cure" is an inspiring and well-written book. I don't know how the Crowley's found the strength to deal with the hand that they were dealt. I became exhausted just reading about it. Highly recommended!

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Great story but ....

While I enjoyed reading the sections of the book about the difficulties the family went through with their children, there was way too much time spent on details of fund-raising and starting the company. I found myself skipping more pages than I was reading.

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Meat, not Hollywood Glitz

The book behind the Hollywood movie "Extraordinary Measures". John Crowley is a driven man - trying to find a find and then develop a cure for Pompe, a lysosomal disease that two of his children are terminally ill with.

The book is the complete story and shares some of the reality the movie leaves out.

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1. ISBN13: 9781572243552
2. Condition: NEW
3. Notes: Brand New from Publisher. No Remainder Mark.
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Editorial Review :

If you or someone you love suffers from Reflex Sympathetic Dystrophy Syndrome (RSDS) also known as complex regional pain syndrome, this new book offers in-depth medical information, techniques, and strategies to help you deal with the syndrome's painful symptoms and psychological effects.

No one knows what causes Reflex Sympathetic Dystrophy Syndrome (RSDS), also known as Complex Regional Pain Syndrome (CRPS), or why it follows an estimated 5% of all injuries. It’s an under-diagnosed and under-treated neurological syndrome characterized by swelling, skin discoloration, stiffness, and intense and chronic burning pain. RSDS affects as many as six million Americans—most often set off by a relatively minor physical trauma, but can also follow surgery or more serious injury. The diagnosis is often missed in the early stages of the disease, and when left untreated the syndrome leaves the sufferer bedridden and in incredible pain. Peter Moskovitz, M.D., and Linda Lang offer for the first time to the lay reader an in-depth explanation of RSDS, the most current and effective treatments, and numerous self-help strategies for dealing with the syndrome’s painful symptoms and psychological affects. From their work as Board of Directors for the RSDSA—the leading patient advocate and research foundation in the United States for RSDS patients—Moskovitz and Lang are able to help readers make sense of this complex syndrome, get appropriate medical care, manage their pain, and regain control over their lives.

Customer Review :

One of the first steps to understanding

I was injured on the job Jan. 2004 and since that time have been diagnosed and treated for RSDS. It has limited & possibly stopped my working life, however, being lost in a workman's compensation buracracy, I had to begin to learn myself how to talk to the doctor about RSDS. Not every patient reacts the same, not every patient is limited in what they can do - BUT - every patient will see their life change somewhat due to pain. This book was my beginning as far as reading material to help me to understand RSDS. It is very informative, easy to read & understand and offers insight on taking control of your situation. It doesn't talk as much as I'd like about treatment plans and options. I have never taken so many drugs before and this book calmed my fears somewhat of becoming an addict. I will continue to learn about this pain syndrome because if I do not, I can't depend on the medical world to do it for me. A very good book to start off with if you have been diagnosed with RSDS.

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Living With RSDS: Your Guide to Coping with Reflex Sympathetic Dystrophy Syndrome

I have had this horrific disease for almost eight years now. I am completely disabled and about to enter an assisted living facility. Through the past eight years I seen quite a bit of literature on RSDS. However, this one is definitely THE best. It covers every aspect of this disease. All the information that an RSD-er needs to have, and thorough information for friends and family. One of the hardest battles we face with this illness is the fact that most people, including in the medical profession, know very little, if anything, about the disease. Many times, when I may be in horrible pain and in need of a little extra help (i.e. carrying in groceries, a wheelchair, a ride somewhere) people do not always offer it, even if they've been told what I have. This is due to a lack of knowledge. RSD-ers suffer in their own private hell, and tend not to tell others how bad they are hurting. It is vital that this book be brought to the attention of the ones in the medical field and those friends and family members of the afflicted.

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Living with RSD

never received book, was old it wasout of stock after a week for the much needed book.

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RSD in real life

I am a kid who has rsd. Life with rsd is as close to hell as it gets. My doctor couldn't explain it, I couldn't explain it to my friends, I couldn't explain it to me: until I read this book. If you have rsd, kid or adult, I highly suggust READING THE BOOK! (It hurts a lot less than having a sympathedic block :)

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Wonderfully Informative and Helpful

Having had just been diagnosed with RSD/CRPS I bought this book as part of my research quest. This was the singly most informative and helpful thing I came across! (and I did a lot of research using a variety of methods)

The book contains three informal sections: the medical which includes the history, past research and medical infomation; living with RSD; and future research.

The first 5 chapters cover the background of the condition and detailed medical information including defining RDS, explaining the pain, diagnosing, and treating RSD. Chapters 6 through 10 are the living with RSD section and were the biggest benefit for me. These chapters cover how RSD can change a person as well as impact a family, adjusting to a life with RSD, living with chronic pain, neurological changes, how to communicate better, when a child has RDS and going out in public when you have RSD (which can be quite difficult). I can't express just how beneficial these chapters were for me. Reading the living with RSD section was a turning point in my 'new' life. Learning tips for better day to day coping and finding out that so many other people with this condition feel the same way I do and actually have had the very same thoughts I was having did amazing things for me. I even used the book as a communication tool with my husband by highlighting some sentences and sections and asking him read them. That spurred him to read more of the book. In the last chapter future research is presented. There is also an appendix with Helpful Tips from RSDS Patients.

If you have RSD/CRPS or you know someone who does I highly recommend this book. It is not only a source of information but it's a source of psychological support.

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1. ISBN13: 9780393320428
2. Condition: NEW
3. Notes: Brand New from Publisher. No Remainder Mark.

Editorial Review :

Winner of the Columbia University Lionel Trilling Award. Robert Murphy was in the prime of his career as an anthropologist when he felt the first symptom of a malady that would ultimately take him on an odyssey stranger than any field trip to the Amazon: a tumor of the spinal cord that progressed slowly and irreversibly into quadriplegia. In this gripping account, Murphy explores society's fears, myths, and misunderstandings about disability, and the damage they inflict. He reports how paralysis—like all disabilities—assaults people's identity, social standing, and ties with others, while at the same time making the love of life burn even more fiercely.

Customer Review :

"The Body Silent" by Robert Murphy

Valuable insights into the world of the disabled from many angles by a respected professor with progressive spinal cord disease. Highly recommended to persons with disabilities and to the general public who often encounter them.

Rating :

Hearing the Body

Bob became paraplegiac at a late age, after having enjoyed a long, brilliant career as a professor at Columbia and an anthropologist who, with his anthropologist wife Yolanda, lived among Amazonian Indians and Saharan camel nomads. He was too clever to be overwhelmed with self-pity. This book was written from the perspective that he loved most: what you'd think is true is probably just the opposite. We expect paralyzed people to get better, like other "sick" patients, but the problem is, they don't: they're damaged selves. Hey--just like everybody else. We all have to come to terms with life's damages and our isolation and loneliness as we attempt to cope with it. Who would ever have thought it possible--we can all learn something compelling about our normal selves, viewing life from the wheelchair! Ironically (and this is the kind of twist that styles Murphy's ideas) the disabled are a mirror for the rest of us: "The paralytic is, quite literally, a prisoner of the flesh, but most humans are convicts of sorts. We live within walls of our own making, staring out at life through bars thrown up by culture and annealed by our fears. . . .[that] induces a mental paralysis, a stilling of thought." Murphy has never sold his soul to an illusion: he speaks candidly as a participant observer of his own encounter with symptoms, diagnosis, treatment, and transformation. Always the fox, he transcends the smoke screen that our cultural prejudices force upon us, and hears his own body and its message with astounding clarity and patience. This is a book that students read eagerly, in both anthropology and sociology classes, because its message is provocative, and its ethnography is true. It teaches us all to listen to the sound of our own struggles with personal identity and mortality, and to smile with the knowledge that we are not alone.

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An incredible book by an incredible person...

This is one of my books that I bought and put aside to read later. I don't remember how long ago I bought it but I am certainly glad that I gave it a second chance to read it before discarding it. I am now not planning to sell this book, as it is too important a volume on disability in society, and it certainly applies to the bioethical and eduethical work I do on the side of my 'regular' job of teaching and writing.

Murphy is unlike me in that he came upon his disability later in life, while I was born basically deaf and remained that way for the first 13 years of my life before getting a hearing aid at the age of 13. Murphy had to deal with a slow-growing tumor that entwined itself into his spinal cord. Unlike many tumors that can be excised with surgery, his was such that the possibility of removing it also came with the possibility of losing everything else, including his life or the ability to continue to do his important work. Like many of us who have chosen not to take the risk of surgery and who don't believe that to be disabled is worse than to be dead, Murphy worked with and around his progressive disabling and was able to give the world another 15 years of his wisdom in cultural anthropology.

This book is a must-read for any person with a disability, no matter when they became disabled. Murphy had the background of an academic anthropologist, with many years of successful teaching and writing for major journals in anthropology and culture. He had also written major books, one of which continues to be used in most universities on women and gender in primitive societies. So in coming into the genre of disability studies, he brought to the field a first-rate mind and ability to write so others can understand difficult concepts.

Murphy's book is not the usual autobiography that one usually expects, but rather explores disability (specifically his, but he introduces others and also the culture) without a single shard of either self-pity or 'hey, look at me' attitude that is so often written about in media (where the media puts someone with a disability on a pedestal that is unrealistic of the very real problems that those of us with disabilities face daily). He writes presenting his disablement as a fait-accompli, dealing with the problems as they arose...and in some cases, he ignored his health situation to the point of putting him at risk for infection from bedsores because he was too busy teaching. Like Murphy states, that wasn't courage as often as it was just not wanting to take the time to have his physical body get in the way of what he was trying to do. In treating his disablement with this attitude, he did become the courageous person that he presented to the public...and I wish so badly I had had the opportunity to meet him and hear him speak. Like so many others such as Michael Fox and Christopher REeve, Murphy was a non-disabled person whose close encounters with his own disablement led him to become a voice in a minority that has long been voiceless. He died much too soon, but in giving his last fifteen years of work to physical disabilities in society, he has provided us with an ongoing voice. I certainly intend to use his words and his writing in my work in hopes that it will inspire others as it has inspired me.

Karen Sadler

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Disibility means reliance on others

Ten years ago since the American Disabilities Act went into effect, the disabled still feel that they are isolated from the real world. Former professor of anthropology at Columbia University Robert F. Murphy examines from his personal perspective the life of a disabled person in a world where he was independent and zealous of life. The reader will discover what it is like for a disabled person to battle besides the inability to carry out everyday function we take for granted. The Body Silent is unlike other books written by the disable. The Body Silent is an excellent book full of prose and not journal entries of how fortunate the non-disabled really are. This book (recommended to me by anthropologist Dr. James Trostle) will change your perspective and outlook on how it is like to grow up again and learning how to walk, one step at a time.

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a celebration of life worth living

As a graduate student in anthropology, I came to know and respect Bob Murphy more than any other scholar. Of the texts he wrote, The Body Silent, stands apart in that it says much about the man, anthropology, disability in American society, and life itself. It will deeply touch a wide variety of readers, and for those that knew him, will bring tears to their eyes. As to its impact on what is now known as disability studies, it put the discipline on the academic agenda. As such, it is a seminal text and is a must for anyone thinking of entering the field.

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Editorial Review :

The world of adapted physical education and sport continues to undergo both legislative and practical changes. Those who want to stay abreast of those changes and provide people with disabilities the best physical education and sport experiences possible will benefit from Adapted Physical Education and Sport, Fourth Edition.

Specifically, the book helps teachers fulfill these requirements: • Provide education compatible with the definition of special education • Identify the unique needs of each person within the program • Offer personalized education specific to each participant’s needs • Provide the most included, integrated setting possible for each individual with disabilities

Adapted Physical Education and Sport, Fourth Edition prepares readers to provide services in the most included setting for each individual. The following are among the new features in this edition: • Chapter updates to incorporate current legislation • Expanded coverage of inclusion • Greater focus on adapted sport, exploring the opportunities in various sports • Major revisions to the measurement and assessment chapter to reflect advances, particularly in alternative assessment • DVD version of the Brockport Physical Fitness Test Video bound into the textbook • Greater attention on behavioral disabilities, with practical applications consistent with IDEA provided for youngsters with behavioral disabilities • New chapter on pervasive developmental disabilities • More emphasis on working with individuals with visual impairments, hearing impairments, or both • Expanded and updated instructor guide and test package, plus a new presentation package

Part I introduces foundational topics in adapted physical education and sport, including program organization and management, adapted sport, individualized programs, and instructional strategies. It helps teachers and leaders to plan, assess, prescribe, teach, and evaluate adapted physical education. Part II explores the unique physical education needs of students with various disabilities.

Part III examines developmental considerations, including motor development, perceptual motor development, and considerations for infants and toddlers as well as for early childhood. In part IV the focus is on physical activities and sports for people with disabilities. It includes chapters on rhythmic movement and dance, aquatics, team sports, individual and adventure sports, and enhancing wheelchair sport performance. Each chapter identifies skills, lead-up activities, modifications, and variations to make the experience meaningful, motivating, and fun for the participants.

Chapter-opening vignettes and numerous real-life problems that must be solved help readers learn and apply the material. Adapted Physical Education and Sport, Fourth Edition, will help practitioners bring out the capabilities of each individual.

Customer Review :

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1. ISBN13: 9780807855478
2. Condition: NEW
3. Notes: Brand New from Publisher. No Remainder Mark.

Editorial Review :

The most common complex birth defect, spina bifida affects approximately one out of every 1,000 children born in the United States. In this comprehensive guide, Dr. Adrian Sandler offers a wealth of useful information on the medical, developmental, and psychological aspects of this condition. Accurate, accessible, and up-to-date, Living with Spina Bifida is written especially for families and professionals who care for children, adolescents, and adults with spina bifida. This edition contains a new preface by the author, addressing recent developments in spina bifida research and treatment, as well as an updated list of spina bifida associations.

Customer Review :

Living with Spina Bifida - A Guide for Families and Professionals

This is an awesome book. I only wish that I had found this book before I had my baby. It would have helped me tremendously. I will use this book for years to come.

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A great starting point for the parent of a child with SB!

The book goes over specific procedures that are common diagnostic tests for a child with spina bifida and it also is great source of information regarding the physical differences a child with SB may have. It is a "must read" if you love someone with SB! Neurology, urology, orthopaedics and pediatrics are all covered somewhat. Great reference too!

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Useful, but maybe a little bit dated

While this book has lots of good and useful information, it's also obvious that the book was originally written ten years ago; some of the information, based on my recent experience, is dated. If you need resources on spina bifida, there aren't many, and I'd recommend picking this one up, but doublecheck any of the information in it against current practice before you act based upon it. The new introduction is nice, but the book could stand to be updated throughout.

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