What do you think?
Rate this book
The Cure: How a Father Raised $100 Million—and Bucked the Medical Establishment—in a Quest to Save His Children
The book that inspired the movie, Extraordinary Measures , starring Harrison 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 even if it meant he had to build a business from scratch to do so.
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.
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.
368 pages, Paperback
First published August 29, 2006
54 people are currently reading
476 people want to read
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 30 of 37 reviews
January 30, 2013
I have to admit to an extreme bias when commenting on this book. My brother and I are two of the 200 adults in the U.S. 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 enough of an enzyme 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 more than a few years.
John Crowley's attempts to raise many millions to effect a treatment for the disease and Geeta Anand's writing about it tell a remarkable story. Crowley's two children were diagnosed with Pompe early 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 quest. 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 developed.
I 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 quest as well as the financial and scientific angles. I have no scientific bent whatsoever, but Anand's story-telling ability gave me a deeper understanding.
I do quarrel 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 effects of Pompe.
A good movie was adapted from this book a few years ago -- "Extreme Measures" with Harrison Ford and Brendan Fraser.
John Crowley's attempts to raise many millions to effect a treatment for the disease and Geeta Anand's writing about it tell a remarkable story. Crowley's two children were diagnosed with Pompe early 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 quest. 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 developed.
I 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 quest as well as the financial and scientific angles. I have no scientific bent whatsoever, but Anand's story-telling ability gave me a deeper understanding.
I do quarrel 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 effects of Pompe.
A good movie was adapted from this book a few years ago -- "Extreme Measures" with Harrison Ford and Brendan Fraser.
April 12, 2015
The writing wasn't stellar, but the story was wonderful. Very inspiring.
April 8, 2010
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 frequently acted in his own best interest without regard to the consequences 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.
dnf
August 29, 2012I 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 hard time getting through it, though she is much more of a trooper than I and actually finished it.
It's now in the mail to someone 3000 miles away, thanks to Paperbackswap.
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 hard time getting through it, though she is much more of a trooper than I and actually finished it.
It's now in the mail to someone 3000 miles away, thanks to Paperbackswap.
October 9, 2017
Excellent book with detailed research and a very moving true story.
December 16, 2017
一個身為家有二個罕病兒的父親, 面臨自己的小孩被宣告活不過5歲. 為了孩子, 努力的讓自己從外行人士, 逐步成為該疾病醫藥領域中｢重要的人｣, 書中有醫藥發展界的角力, 以及作者同時身為｢重要的人｣及｢父親｣兩種角色的衝突, 是一本精彩的好書.
September 13, 2017
Interested in this because I've seen the movie a few times.
For non-fiction, I enjoyed it. I was sad when their marriage struggled.
For non-fiction, I enjoyed it. I was sad when their marriage struggled.
June 26, 2010
John Crowley, adalah contoh sempurna dari sebuah keluarga yang merepresenrasikan American Dream. Memiliki keluarga yang harmonis, istri baik hati, anak-anak yang lucu, punya pekerjaan mapan di perusahaan bonafit, hidupnya nyaris sempurna. nyaris...
Tidak ada seorang pun bisa menebak kapan perputaran nasib akan menempatkan kita di kotak mana, keberuntungan atau kesialan. Pun dengan Crowley. tiga dari dua anaknya mengidap penyakit kelainan genetis fatal, penyakit Pompe. suatu cacat lahir yang mengakibatkan kelumpuhan fatal pada anak dengan angka harapan hidup yang membuat nyali menciut, maksimal hanya sampai umur 9 tahun. seperti penyakit langka lainnya, penyakit ini tak ada obatnya karena perhatian dunia medis biasanya lebih tercurahkan pada penyakit-penyakit massal yang merenggut ratusan hingga ratusan juta nyawa. fyi, malaria adalah pembunuh nomer satu sepanjang sejarah. mulai dari era manusia purba hingga abad sekarang, malaria telah menewaskan milyaran orang sepanjang sejarah.
Lalu, anak kedua Crowley yang mengidap penyakit Pompe berulang tahun yang ke-8, segera saja terjadi kepanikan. Jika para penderita penyakit Pompe memiliki harapan hidup maksimal 9 tahun, berarti berapa tinggal hari lagi umur anaknya? dan bagaimana jika tidak mencapai umur maksimal 9 tahun? kebahagiaan keluarga Crowley pun nyaris menguap seketika direnggut kepanikan, kecemasan dan kepasrahan.
Namun, harapan itu belum sirna semuanya. dengan keajaiban internet, Crowley menemukan jurnal penelitian seorang ilmuwan yang meneliti penyakit ini. seorang, karena tak ada yaang tertarik dengan kasus penyakit langka ini dengan alasan sederhana, rumit dan jelas tidak komersil. Namun, Crowley tetap gigih dalam menapaki setiap jalan harapan, maka datanglah dia menemui sang ilmuwan. Tak disangka, harapan yang ia kira bakal membawanya menuju gerbang kebahagiaan ternyata tak lebih dari sebuah lubang sempit nan gelap, apa yang ilmuwan itu miliki, baru sebatas teori, tak ada produk obat.
Lubang sempit nan gelap itu semakin berliku saat si ilmuwan memberi tahu alasan mengapa penelitian dia baru sebatas teori, biaya yang supermahal. Nyaris 500 juta dollar buat biaya penelitian obat penyakit Pompe. siapa yang berani bayar penelitian penyakit yang belum tentu berhasil dan jelas-jelas tak akan laku dijual kecuali mungkin paling banyak seribuan orang di planet ini? Tapi Crowley pantang menyerah, dengan bekerja sama dengan sesama orang tua yang anaknya menderita penyakit langka itu, Crowley akhirnya berhasil mengumpulkan dana lumayan fantastis secara swadaya, meski jauh dari cukup tentu saja.
Berpacu dengan waktu, dihantui detik-detik kematian anaknya yang semakin dekat, Crowley telah mengorbankan segalanya demi sang buah hati untuk sesuatu yang belum pasti, teori sang imuwan bisa saja salah... dan kalo pun benar, produk penelitian itu belum dicobakan pada manusia apakah bisa berhasil atau punya efek samping berbahaya bahkan gagal sama sekali.
bagi yang sudah membaca novel Doctors-nya Erich Segal
bakal tau kalo alur cerita ini rada "basi". Tapi ini adalah kisah nyata! non fiksi! Kisah sosok-sosok nyata yang benar-benar ada dalam kehidupan, yang menjalani hidup sehari-hari seperti orang lain, yang harus menghadapi cobaan hidup dimana batas antara keajaiban dan bencana bisa saja semakin menipis setipis rambut bahkan mungkin sirna sama sekali...
Tidak ada seorang pun bisa menebak kapan perputaran nasib akan menempatkan kita di kotak mana, keberuntungan atau kesialan. Pun dengan Crowley. tiga dari dua anaknya mengidap penyakit kelainan genetis fatal, penyakit Pompe. suatu cacat lahir yang mengakibatkan kelumpuhan fatal pada anak dengan angka harapan hidup yang membuat nyali menciut, maksimal hanya sampai umur 9 tahun. seperti penyakit langka lainnya, penyakit ini tak ada obatnya karena perhatian dunia medis biasanya lebih tercurahkan pada penyakit-penyakit massal yang merenggut ratusan hingga ratusan juta nyawa. fyi, malaria adalah pembunuh nomer satu sepanjang sejarah. mulai dari era manusia purba hingga abad sekarang, malaria telah menewaskan milyaran orang sepanjang sejarah.
Lalu, anak kedua Crowley yang mengidap penyakit Pompe berulang tahun yang ke-8, segera saja terjadi kepanikan. Jika para penderita penyakit Pompe memiliki harapan hidup maksimal 9 tahun, berarti berapa tinggal hari lagi umur anaknya? dan bagaimana jika tidak mencapai umur maksimal 9 tahun? kebahagiaan keluarga Crowley pun nyaris menguap seketika direnggut kepanikan, kecemasan dan kepasrahan.
Namun, harapan itu belum sirna semuanya. dengan keajaiban internet, Crowley menemukan jurnal penelitian seorang ilmuwan yang meneliti penyakit ini. seorang, karena tak ada yaang tertarik dengan kasus penyakit langka ini dengan alasan sederhana, rumit dan jelas tidak komersil. Namun, Crowley tetap gigih dalam menapaki setiap jalan harapan, maka datanglah dia menemui sang ilmuwan. Tak disangka, harapan yang ia kira bakal membawanya menuju gerbang kebahagiaan ternyata tak lebih dari sebuah lubang sempit nan gelap, apa yang ilmuwan itu miliki, baru sebatas teori, tak ada produk obat.
Lubang sempit nan gelap itu semakin berliku saat si ilmuwan memberi tahu alasan mengapa penelitian dia baru sebatas teori, biaya yang supermahal. Nyaris 500 juta dollar buat biaya penelitian obat penyakit Pompe. siapa yang berani bayar penelitian penyakit yang belum tentu berhasil dan jelas-jelas tak akan laku dijual kecuali mungkin paling banyak seribuan orang di planet ini? Tapi Crowley pantang menyerah, dengan bekerja sama dengan sesama orang tua yang anaknya menderita penyakit langka itu, Crowley akhirnya berhasil mengumpulkan dana lumayan fantastis secara swadaya, meski jauh dari cukup tentu saja.
Berpacu dengan waktu, dihantui detik-detik kematian anaknya yang semakin dekat, Crowley telah mengorbankan segalanya demi sang buah hati untuk sesuatu yang belum pasti, teori sang imuwan bisa saja salah... dan kalo pun benar, produk penelitian itu belum dicobakan pada manusia apakah bisa berhasil atau punya efek samping berbahaya bahkan gagal sama sekali.
bagi yang sudah membaca novel Doctors-nya Erich Segal
bakal tau kalo alur cerita ini rada "basi". Tapi ini adalah kisah nyata! non fiksi! Kisah sosok-sosok nyata yang benar-benar ada dalam kehidupan, yang menjalani hidup sehari-hari seperti orang lain, yang harus menghadapi cobaan hidup dimana batas antara keajaiban dan bencana bisa saja semakin menipis setipis rambut bahkan mungkin sirna sama sekali...
February 25, 2017
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 explains 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.
A lot of this books explains 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.
August 14, 2010
This was an interesting read. I cannot 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 do everything in your power and more 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 more technical than I would usually like but appropriately so. Definitely worth my time and anyone else'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 better.
I finished this a while ago but forgot to move it to my read shelf.
I finished this a while ago but forgot to move it to my read shelf.
July 22, 2010
Incredible true story. Very well written. What I loved the most about it was how Anand shared a more 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, etc.
Anand did a great job of showing the human side of everyone involved in this story. Every time John hesitated to share something about his family and the struggles they faced each day, and then chose to share it, an arch enemy 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.
Anand did a great job of showing the human side of everyone involved in this story. Every time John hesitated to share something about his family and the struggles they faced each day, and then chose to share it, an arch enemy 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.
October 16, 2013
Wow. All I can say is Wow. The energy 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 more detailed and eventful than the movie even came close to being! And if you have never heard of Pompe disease...you will learn a lot about it in this book. And what it takes to get a drug to work, to be good enough to try on animals, let alone people...what 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 every day.
January 25, 2009
Amazing, inspiring and frustrating all at the same time. This is the story of a man whose two children were diagnosed with a very rare, ultimately fatal disease, who decided to fund raise and then ultimately build a company in order to find a cure. Lots of dilemmas and no easy answers. I was not only impressed by the story, but also the writing which was perfectly balanced between medical details and the emotional struggle.
ps--Forrest and Abbie, I definitely think you would enjoy this.
ps--Forrest and Abbie, I definitely think you would enjoy this.
January 22, 2013
When a father learns his children have a genetic disease for which there is no cure, he decides to develop one. Overcoming a zillion obstacles in his way, he found a company to take a biotech drug from laboratory stage to clinical trials in 3 years. In three damn years! Can you believe the spirit of this man who worked with a constant fear at the back of his mind, and yet looked at failure squarely in its eye all through his journey to eventually triumph?
July 26, 2014
I tried to read this book and like it. I was intrigued by the movie and I wanted to find out the facts. Well, another case of movie ruining book. The movie changed very important details about the children's ages, abilities, and the outcome of the father's work.
The story, told in the short blurb, is compelling. However this book reads like a dry history of the formation of a foundation. Unfortunately, it was quite boring and I had to skim over several passages. I wish this book had been written better as this family's story is quite remarkable.
The story, told in the short blurb, is compelling. However this book reads like a dry history of the formation of a foundation. Unfortunately, it was quite boring and I had to skim over several passages. I wish this book had been written better as this family's story is quite remarkable.
April 24, 2009
This is the best book I have read in years. I have not been this absorbed in a story since before I had children. It took a tale of struggle, of hope, of love, to remind me why I love to read. I feel like I know the Crowleys and I want to know more. John's asking for forgiveness rather than permission is inspiring. His drive to do whatever he can for his family is amazing. Aileen is a role model for mothers everywhere. Her children are happy and that is what matters the most.
December 28, 2007
Hard to believe it is a true story - amazingly a self-centered dad gets a wake up call when his children fall sick with a rare disease. He uses his sometimes less-than-integrity-filled schmoozy tactics to raise money and start a company to try to find a cure. It's not amazingly well written, but the story itself carries the book quite far.
January 13, 2008
I bought this book at a discount book sell and I didn't expect much out of it. Hell, was I wrong. So good. So inspirational. Anyone who cares about healthcare, research, children, and families should read this one. Geeta Anand tells the story of the Crowley family with superb ease and attractiveness.
February 10, 2012
As a mom. . or a blessed grandma living with beautiful, healthy children, I couldn't help but be moved by the story of this family with 2 children who have life-threatening, devastating illness. Made me so thankful for my blessings. Certainly not everyone has the background, resources, ability or temperament to do what John Crowley did, but it made a good story!
June 1, 2010
Interesting tale of a father's determination to raise money to find a cure for the rare metabolic disorder afficting TWO of his children. It was hard to read at times--it makes me sad to think of the sick children. I walked out of the movie, Lorenzo's Oil for the same reason. There is lots of interesting science in this book--glycosylation of proteins is important!
November 15, 2014
John Crowley had two little girls with a rare disease and no one was was working on a cure, it was too rare. His 15 and 5 month old daughters were only given months to live. The father quit his work, researched the disease, raised over 100 million dollars, hired the scientists and found a cure for his daughters before it was too late. It is an amazing story, very inspirational.
June 29, 2008
This was a very interesting read about one couple's efforts to save their two children afflicted with a rare disease. It gives an inside look at the R&D process in the pharmaceutical industry and how much it takes to win attention for a needed drug and get it developed and available.
Currently reading
January 22, 2009Been trying to get through this for over a year. It's the story of my former client and his quest to save his children from a rare life-threatening disease. The writing is clearly that of a newspaper journalist and NOT a novelist. Reads like a 300 page Wall Street Journal article.
March 23, 2010
This book really moved me. I worked on the production suite for the Pompe drug discussed in the finale of the book, and was aware of the dire need for the drug; however, hearing the personal stories of Pompe children really struck a chord. And I am amazed at the difference one person can make!
July 9, 2013
Couldn't put it down! The journey this family takes is heart wrenching and so raw. I really enjoyed the business, medical, and personal components that all meshed together. It provided a unique perspective that I haven't had before. This is one of the best books I have ever read.
January 30, 2012
Impressive true story. The writing wasn't spectacular (slightly cheesy), but I was amazed by the persistence of this father.
July 15, 2009
It's about Genzyme where I work...we have a unique position on the book and upcoming movie staring Harrison Ford.
January 18, 2017
Amazing true story of a father who works tirelessly to find a way to help his two children who have Pompe disease. I liked the movie, but of course the book is much, much better.
August 16, 2010
Impressive what this guy accomplished with sheer determination and guts. At the same time, he's conceited, naive, and kind of a jerk sometimes. Interesting read.
September 12, 2010
Interesting read - helps you understand the process of making new drugs...
Displaying 1 - 30 of 37 reviews