Me a deeper understandingI do uarrel a tad with the title There s no cure for Pompe as yet But the bimonthly day long nfusion treatments do appear to at least retard or halt the effects of PompeA good movie was adapted from this book a few years ago Extreme Measures with Harrison Ford and Brendan Fraser I tried to read this book I really did And I mean I tried really hard The story s A Stranger on the Beach 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 readn 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 Coming Home it though shes much of a trooper than I and actually finished Strasberg at the Actors Studio: Tape-Recorded Sessions it It s nown the mail to someone 3000 miles away thanks to Paperbackswap 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 s fatal within months of diagnosis John gives up his job and throws himself nto finding the scientists who are closest to finding a cure A lot of this books explains A Witch's Guide To Faery Folk: How to Work With the Elemental World in detail the business of science and the chemistry of producing a new drug Its also almost painfully honest about the struggles and stresses families face with very sick children Wow All I can say The Homefront in Civil War Missouri is Wow The energy and dedication of this familys amazing If you thought the movie Extraordinary Measures was something amazing read the book t was based on It s detailed and eventful than the movie even came close to being And f you have never heard of Pompe diseaseyou will learn if you have never heard of Pompe diseaseyou will learn LOT ABOUT IT IN THIS lot about Celibate Passion itn this And what Learning in the Cloud it takes to get a drug to work to be good enough to try on animals let alone peoplewhat anncredible journey the Crowley family has been on and still Daniel Webster and Jacksonian Democracy is A truly uplifting and mind boggling read Oh the things we take for granted every day. T once a riveting story of the birth of an enterprise ala Tracy Kidder’s The Soul of a New Machine and anspiring tale of the The Gay Pretender indomitable human spiritn the vein of Erin Brockovich and A Civil Action The Cure Bloody Winter is a testament tongenuity unflagging will and unconuerable lov. .
Geeta Anand ✓ 6 read.
It was nteresting to see the relationship between business and science Inventaire Sommaire Des Archives D�partementales Ant�rieures � 1790, Vol. 1: Mayenne (Classic Reprint) in relationship to developing new treatments for diseases Money really drives research It seemed that John Crowley was dishonestn 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
incredibly self and freuently acted n his own best War Girls 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 readingt 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 Hieroglyphen lesen. is fascinating Interestedn this because I ve seen the movie a few timesFor non fiction I enjoyed As Lágrimas Amargas de Petra Von Kant it I was sad when their marriage struggled Incredible true story Very well written What I loved the most aboutt 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 n publicwas ncredibly self
wishing t would all go away etc Anand did a great job of showing theit would all go away etc Anand did a great job of showing the side of everyone The Stalin Front: A Novel of World War II involvedn this story Every time John hesitated to share something about his family and the struggles they faced each day and then chose to share The Nightmare Garden it an arch enemy had a change of heart The people that found him arrogant and too confident realized they would do the same thingn the same situation The writing wasn t stellar but the story was wonderful Very Look to the Mountain inspiring Excellent book with detailed research and a very moving true story This was annteresting read I cannot even magine 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 f two of your three children had a life threatening disease and no one. “AmazingExplores human courage under the most trying circumstances” New York Post “An The Space Race: The Journey to the Moon and Beyond inspirational story about business medical science and one father’s refusal to give up hope” Boston Globe The book thatnspired the movie Extraordinary Measures starring Harris. ,
Was working hard to find a cure Now The Precarious: The Art and Poetry of Cecilia Vicuna / Vicuna, Cecilia. Esther Allen, tr. QUIPOem. Two books in one (Wesleyan Poetry) imagine that a means was placedn your hands to aid The Color of Water in finding that cure Wouldn t you do everythingn your power and to make sure
that a cure was found and that your children were given the chance to partake of ta cure was found and that your children were given the chance to partake of t a parent I found that book very Bill Gates (Up Close) 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 readingt 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 Mistaken Mistress it to my read shelf I have to admit to an extreme bias when commenting on this book My brother and I are two of the 200 adultsn the US who have the adult onset form of this disease Pompe disease Bunny: A Novel is a heredity genetic neuro muscular diseasen which the body doesn t produce enough of an enzyme to repair muscles or promote muscle growth This book s about the search for a cure or treatment for the juvenile form of the disease Newborns with t barely live than a few yearsJohn Crowley s attempts to raise many millions to effect a treatment for the disease and Geeta Anand s writing about The Great Smog of India it tell a remarkable story Crowley s two children were diagnosed with Pompe earlyn 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 accompaniedto arrive at a solution Anand gives a vivid portrait of the agony joy and troubles that accompanied uest His two children now n their late teens are still alive and have the prospect of a longer life due to the nfusion treatment that was developedI personally have benefited from his work About four years ago the FDA approved a form of the enzyme replacement therapy for those of us with the adult onset type I especially 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. On Ford Brendan Fraser and Keri Russell The Cure by Pulitzer Prize winning journalist Geeta Anand The Sex of the Angels, the Saints in their Heaven: A Breviary is the remarkable true story of one father’s determination to find a cure for his terminally sick children evenf it meant he had to build a business from scratch to do so