Customer Reviews

The Cure: How a Father Raised $100 Million--And Bucked the Medical Establishment--In a Quest to Save His Children

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This wonderful book has a lot of emotional depth and complexity. John Crowley, the young father, is brash, brilliant, arrogant, and ignorant. He makes personal mistakes and business mistakes, yet you remain drawn to his story by empathy for his desperation as he fears that his small children will suffer a slow painful death. It's an honest and interesting portrait of a real human being, not a one-dimensional hero.

It's not really a business book and you don't need any familiarity with venture capital financing to understand the text, but John Crowley's business provides the book with a fascinating emotional contrast between his frantic urgency as a parent and the dispassionate PowerPoint analyses expected by his investors. They share a common goal, but the mindset is completely different.

It's not really a science book, but the drug development process adds to the story's drama. There's no Eureka! moment when all the problems are solved. Patients are desperate for anything they can get as soon as they can get it, but the science is ambiguous, the bizarre biotechnology manufacturing processes are difficult to operate, and then the clinical trial results are uncertain. An experimental compound might kill a young patient, or bring quick improvements that fade over time, or have different impacts on different patients. And even with these uncertain prospects there's strong competition among parents for the extremely limited number of places in trials.

One of the most appealing aspects of the book is the author's light touch. She never puts herself or her opinions into the story. The book ends with an Afterword relating events subsequent to the basic text, but the author doesn't seize pages to tell us what it all means. At the end I found myself wondering, "Well, what does it all mean?" I looked up Pompe disease information on the internet, wondered what people in the Pompe "community" thought about the book, and wanted to know how the science has progressed. The book makes you think and it makes you care.

As a father myself, I was incredibly moved by this book. It's an inspiring story about the things parents will do for their children. The writing is effortless, vivid and sensitive - you go through the Crowley's ups and downs with them from chapter to chapter, and you cannot stop until you have finished the entire book. I never thought reading about biotech firms could be this enoyable either - the author does an excellent job of taking you into world of biotech and venture capital and making it at once interesting, informative and easy to understand.

This is simply a great book about a family's incredible, heart-wrenching story. A must read for all, especially for parents (and would be entrepreneurs).

Kudos to this story of John Crowley's unbelievably ambitious, frequently frustrated and sometimes ethically reckless effort to find a cure for the fatal disease that afflicts two of his children.

This book's perfect pacing and lean, utilitarian prose treats a tale that could have been as saccharine as a Lifetime movie as an unremittingly suspenseful thriller as Crowley has to balance his fiduciary responsibilities as the head of a biotechnology firm with his pressing need to get his children into a clinical drug trial before they die.

It's a predicament that makes Sophie's Choice seem like a simple dilemma to resolve, but the author effortlessly weaves the complex world of biotechnology research and venture capital into a family story that any parent could identify with. It reminds me of David Simon's Homicide or Jon Harr's Civil Action.

Crowley may now be a rich man, but it's uplifting to read about a CEO driven to succeed -- even if it means bending the rules -- by motives far more moral than the soul-sucking avarice that dominates Wall Street today.

Ms. Anand tells a wonderful tale of true love. Love of a husband and wife faced with unexpected challenges so early in their marriage, and how they struggled to keep that love alive under both sad and horrific conditions. Love of children for their parents and each other. Love of family, both immediate and extended. And love for each and every person touched by the fight for the cure. I was swept away by the human drama and just when I thought I knew what was going to happen next, the story look another unforeseen turn. It's amazing to realize that this is a true story. Life and love doesn't get any better than this.

Very good book - Interesting story. Highlights are the lengths a family goes through to help their children, and the inspirational message. I think the title is ironic, since there is not actually a "cure" for Pompe Disease, merely a treatment to help stabilize and possibly restore some muscle function. Also misleading a bit, because while Crowley without a doubt worked very hard on a cure, the actual treatment approved by the fda was not the main one he was involved with researching/funding. Nonetheless, still a very admirable man and good story.

This book was made into the movie "Extraordinary Measures," and I'm glad that the author probably was well-paid for the effort she put into this book. The level of detail here is extraordinary in itself. But at the same time, it is also the book's one weakness: what story is she telling? Is this a human interest story, an inspiring story of the struggles and triumphs of a family with more than its fair share of heartbreak and suffering? Or is it a story about venture capital and the role it plays in the pharmaceutical industry? Actually, it's both, and it pretty much works, since John Crowley is both the father of an extraordinary family and the business executive who tries to find a cure for a terrible disease.

But because of this double focus, almost any reader is going to find parts of the story a waste of time, and get the urge to start skimming sections. There is also quite a bit of information about the science side of the story as well, but again, neither the human interest reader nor the business reader is likely to care.

The writing is smooth and unobtrusive. The pacing is excellent. The story is heart-breaking and amazing. But the question of audience remains.

Also, since the author originally wrote two stories about this family and their situation for the Wall Street Journal, one of the morals she draws in her conclusion is that this book demonstrates "the power of the profit motive to speed science into medicine." I think many readers would question whether this story or any story shows "the power of the profit motive" in such a positive light. The need to put stockholder value first, above the needs of patients with rare diseases, and the extraordinary cost of the medicine, as well as the extraordinary financial rewards that a man like John Crowley receives, all call that conclusion into question in my mind.

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!

This is a great book. John Crowley discovers that his two youngest kids are dying from a rare disease - one so rare that nobody has bothered to invest a lot in a cure. Crowley ends up quitting his job, starting a drug company and finding a drug to treat his kids. Only to discover that the FDA considers it a conflict of interest to include his own kids in the trials!

It's a great heart-warming story of a family's struggle with a little known disease written by a great writer - Greeta Anand. The book is mostly about the business side (as opposed to the medical side) of the disease. It's a story about the dad's struggle to find a cure for the disease. He's never run a company, never gotten funding, knows little about biology or science, and yet he starts a very successful biotech company and finds a drug that works - all for his kids.

I found the conflict of interest part interesting. John Crowley brings in people suffering from Pompe to meet the people in the company. Most of the researchers have never met anyone suffering from the disease they are trying to cure! And get this, it could be considered a conflict of interest to meet the people they are trying to cure! That doesn't make a lot of sense to me. In the computer high tech world we consider it a very good thing to meet your users - you are making the product for them! In Crowley's case the visitors helped motivate and empassion his company.

The story of John Crowley and his family is amazing. Anand did a great job of telling the story in a way that I could feel what the family was going through and the business challenges that John took on.

This book gives great insight into what parents of terminally ill children experience and the lengths they will go to to save those who are the most important people in their lives. A must read, especially for those who have any similar experience!