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How a Father Raised $100 Million--and Bucked the Medical Establishment--in a Quest to Save His Children
The riveting true story of John and Aileen Crowley's race to find a cure for Pompe disease that inspired the movie Extraordinary Measures
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.
The inspiration for the captivating film Extraordinary Measures, starring Brendan Fraser and Harrison Ford, The Cure is a remarkable true story of cutting-edge science, business acumen and daring, and one family's indomitable spirit.
355 pages; ISBN 9780061800450
On a clear, brilliantly sunny afternoon in June 1997, John Crowley walked to the podium to deliver the Class Day address to his fellow Harvard Business School graduates. At five feet six inches tall, he stood ramrod straight in his navy suit, his dark hair closely cropped and his square face wreathed in a bright, eager expression. Eyes shining, he unleashed a crisp, white smile into the crowd.
John opened a folder containing his speech and paused, relishing the attention of nine hundred fellow graduates and a few thousand of their friends and family members. They filled the metal chairs arranged in hundreds of rows in front of him under a white tent. To his left stood Baker Library, and behind the audience the Charles River sparkled. Across the river, the green-topped cupola of Eliot House, a Harvard college dorm, poked out from behind the summer greenery.
The business school had developed a distinct, close-knit identity since moving in 1927 to its own campus of neo-Georgian buildings. Students spent many hours each day with one another in class, and many more hours together on group homework assignments at night. Friendships born here tended to live on as the students graduated to become a disproportionately large portion of the nation's business and political elite. Many who came here were the sons and daughters of heads of state, ambassadors, and company chief executives; those who didn't start off as part of the elite were likely to join it when they left. Of the nation's Fortune 500 companies, some 15 percent of their top three officers came through this business school.
John's family sat in the front few rows of the audience. His mother Barbara sat beside his stepfather Lou and half-brother Jason. In the next row, his six-month-old daughter Megan, a bottle in her mouth, looked up from the lap of his wife Aileen. Automatically, his eyes scanned the seats around her for their two-year-old son John Jr., before he remembered that they had decided to leave him at home with a baby-sitter. But the rest of his tight-knit family was there, including Aileen's parents, Marty and Kathy, and her Uncle Charles and Aunt Jane.
"It is my great privilege and honor to share with you today the many experiences of the past two years and the hopes for the future of what is now and should always be the greatest class in the history of the Harvard Business School," John began. "For those of you keeping count, that's my first attempt to pander to the crowd," he said, looking up and smiling as the audience laughed appreciatively.
"In the one and a half hours that I have to speak with you all today—scared you, didn't I?—okay, in the next twenty minutes, I'll do my best to capture what has been for so many of us such a powerful and moving experience both in learning and living."
John's mother nodded, thinking that in his opening, her son had expressed the awesomeness of the moment with enough humor to avoid being annoyingly grandiose. He had always exuded a boyish charm, and others had always seen him as the kind of guy who was almost too good to be true—but was true. It was a testament to the high esteem his classmates held him in that he'd been elected to be their Class Day speaker, their representative at this graduation event. He reminded her so much of his late father, a police officer, who had snared her with his wiseass sense of humor the night they'd been introduced by mutual friends at Oprandy's, a New Jersey bar, in February 1966. When the bar closed, he and his brother had sat in her car for another hour, laughing as they regaled her with joke after joke, until her father drove up and knocked on the window, demanding to know why she wasn't home. By April, they were engaged, and they rushed to marry in August because she was pregnant with John.1
As she did at every milestone in John's life, Barbara thought of how thrilled his father would have been. She remembered the early morning in January more than twenty years earlier when she'd sat John, then seven, and his younger brother Joseph, four, side by side on her bed to tell them their father had died. Sergeant John Francis Crowley—after whom John was named—had been found dead at the end of the night shift, apparently of carbon monoxide poisoning caused by a defect in his police cruiser.
She'd left Joe at home and taken John to the funeral at the towering stone St. Cecelia's Catholic Church in the town of Englewood, New Jersey, where she'd been married, her children had been baptized, and both sons would serve as altar boys. Thousands filled the twenty-five rows of dark wooden pews and spilled onto the street outside. Sergeant Crowley, the son of an Irish immigrant rubber factory worker, had grown up in the ground-floor apartment of a four-family brick house on Prospect Street, a few blocks from the church where he was being eulogized at age thirty-five. In stories in the local newspapers, friends and colleagues remembered him for his sense of humor and his pride in being a cop. Sergeant Crowley "was so proud to be a cop that nothing else was important to him," Police Chief Thomas Ryan told one newspaper.
Little John Crowley had listened intently in the front row as the priest addressed the homily to him, telling him there was no way he could understand why God had taken his father from him so young, but that now it was his responsibility to help take care of his mother and his family. After his father's coffin, draped in an American flag—Sergeant Crowley had also been a U.S. Marine—was carried down the twenty-two marble steps, John had instinctively saluted. Everyone assumed his mother had prompted him . . .