PDF or EBOOK (The Cure How a Father Raised 100 Million—and Bucked the Medical Establishment—in a uest to Save His Children)


Erful Very inspiring I have to admit to an xtreme bias when commenting on this book My brother and I are two of the 200 adults in the US who have the adult onset form of this disease Pompe disease is a heredity genetic neuro muscular disease in which the body doesn t produce nough of an nzyme to repair muscles or promote muscle growth This book is about the search for a cure or treatment for the juvenile form of the disease Newborns with it barely live than a few yearsJohn Crowley s attempts to raise many millions to Obsession effect a treatment for the disease and Geeta Anand s writing about it tell a remarkable story Crowley s two children were diagnosed with Pompearly in life and this details his struggles with the science community and investors to arrive at a solution Anand gives a vivid portrait of the agony joy and troubles that accompanied his uest His two children now in their late teens are still alive and have the prospect

of a longer 
a longer due to the infusion treatment that was developedI personally have benefited from his work About four years ago the FDA approved a form of the nzyme replacement therapy for those of us with the adult onset type I specially like Anand s writing because she concentrates on the human aspects of Crowley especially like Anand s writing because she concentrates on the human aspects of Crowley uest as well as the financial and scientific angles I have no scientific bent whatsoever but Anand s story telling ability gave me a deeper understandingI do uarrel a tad with the title There is no cure for Pompe as yet But the bimonthly day long infusion treatments do appear to at least retard or halt the ffects of PompeA good movie was adapted from this book a few years ago Extreme Measures with Harrison Ford and Brendan Fraser. T once a riveting story of the birth of an nterprise ala Tracy Kidder’s The Soul of a New Machine and a inspiring tale of the indomitable human spirit in the vein of Erin Brockovich and A Civil Action The Cure is a testament to ingenuity unflagging will and unconuerable lov. ,
The Cure How a Father Raised 100 Million—and Bucked the Medical Establishment—in a uest to Save His Children

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Wow All I can say *Is Wow The Energy And * Wow The All Roads Lead Home energy and of this family is amazing If you thought the movie Extraordinary Measures was something amazing read the book it was based on It s detailed andventful than the movie ven came close to being And if you have never heard of Pompe diseaseyou will learn a lot about it in this book And what it takes to get a drug to work to be good nough to on animals let peoplewhat an incredible journey the Crowley family has been on and still is A truly uplifting and mind boggling alone peoplewhat an incredible journey the Crowley family has been on and still is A truly uplifting and mind boggling Oh the things we take for granted very day Incredible true story Very well written What I loved the most about it was how Anand shared a well rounded story She didn t focus on only John and Aileen s herois This was an interesting read I cannot ven imagine what this family had to deal with and the author did such a good job portraying both parents and the children and all that was going on around them Imagine if two of your three children had a life threatening disease and no one was working hard to find a cure Now imagine that a means was placed in your hands to aid in finding that cure Wouldn t you do The Mephisto Threat (Paul Tallis everything in your power and to make sure that a cure was found and that your children were given the chance to partake of it As a parent I found that book very important to read It was a little technical than I would usually like but appropriately so Definitely worth my time and anyonelse s to read After reading it I borrowed the movie from our library to watch Extraordinary Measures with Harrison Ford and decided I liked the book betterI finished this a while ago but forgot to move it to my read shelf Five stars for the writing and 5 star. “AmazingExplores human courage under the most trying circumstances” New York Post “An inspirational story about business medical science and one father’s refusal to give up hope” Boston Globe The book that inspired the movie Extraordinary Measures starring Harris. ,
S for John and Aileen Crowley who faced one of life s biggest with great of life biggest challenges with great and brilliance T Interested in this because I ve seen the movie a few timesFor non fiction I njoyed it I was sad when their marriage struggled Excellent book with detailed research and a very moving true story I tried to read this book I really did And I mean I tried really hard The story is incredible I cheated and did a combination of watching the movie based off the book and wikipedia search on the subject But Geeta Anand has to be one of the driest authors I But Geeta Anand has to be one of the driest authors I read in recent history I gave up well before halfway through after thumbing through the photos of course and gave the book to my Mom Even she had a hard time getting through it though she is much of a trooper than I and actually finished it It s now in the mail to someone 3000 miles away thanks to Paperbackswap It was interesting to see the relationship between business and science in relationship to developing new treatments for diseases Money really drives research It seemed that John Crowley was dishonest in his business dealings On one hand I think his passion to find a cure for his disease drove the research and on the other hand I think he was incredibly self centered and freuently acted in his own best interest without regard to the conseuences to his family I read this while flying across the country on an airplane last week and I had to stop reading it because I kept crying It would be so devastating to be told that your child only would live to their 5th birthday at the latest because there was no treatment for their disease I think science is fascinating The writing wasn t stellar but the story was wond. On Ford Brendan Fraser and Keri Russell The Cure by Pulitzer Prize winning journalist Geeta Anand is the remarkable true story of one father’s determination to find a cure for his terminally sick children ven if it meant he had to build a business from scratch to do so