(E–pub) [The Cure How a Father Raised 100 Million—and Bucked the Medical Establishment—in a uest to Save His Children]

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 life 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 s 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 This was an interesting read I cannot Hard Bread (Phoenix Poets even 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 doverything 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 Anyone Else

S TO READ AFTER READING IT 
To Read After Reading It anyone Electromyography for Experimentalists else s to read After reading it 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 Excellent book with detailed research and a very moving true story The writing wasn t stellar but the story was wonderful Very inspiring. T once a riveting story of the birth of annterprise 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. 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 heroism as parents to their suffering children but she also shared real stories of their weak moments their rocky marriage meltdowns in public wishing it would all go away tc Anand did "A GREAT JOB OF SHOWING THE HUMAN SIDE OF "great job of showing the Human Side Of Involved In This Story Every Time side of veryone involved in this story Every time hesitated to share something about his family and the struggles they faced ach day and then chose to share it an arch nemy had a change of heart The people that found him arrogant and too confident realized they would do the same thing in the same situation Interested in this because I ve seen the movie a few timesFor non fiction I Runaway Wedding enjoyed it I was sad when their marriage struggled 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 Wow All I can say is Wow Thenergy and dedication 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 and Wicked Loving Lies eventful than the movieven 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 try on animals let alone “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. Eoplewhat an incredible journey the Crowley family has been on and still is A truly uplifting and mind boggling read Oh the things we take for granted very day Five stars for the writing and 5 stars for John and Aileen Crowley who faced one of life s biggest challenges with great courage and brilliance They have two children with Pompe a rare disease that is fatal within months of diagnosis John gives up his job and throws himself into finding the scientists who are closest to finding a cure A lot of this books xplains in detail the business of science and the chemistry of producing a new drug It is also almost painfully honest about the struggles and stresses families face with very sick children 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 ve 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 Even she had a 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 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 ffect a treatment for the disease and Geeta Anand s writing about it tell a remarkable story Crowley s two children were diagnosed with Pompe arly in life and this details his struggles with the science community and. 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 .

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