John Crowley: 'Our Little Miracles'

Article excerpt

Byline: Richard M. Smith

The subject of the film 'Extraordinary Measures' on creating a company to save his kids' lives.

Career decisions don't get any more dramatic than the one John Crowley faced. Crowley, a lawyer and Harvard Business School graduate, was working at Bristol-Myers Squibb when his two young children were diagnosed with Pompe disease, a fatal degenerative disorder. Rather than accept their death sentence, Crowley quit his job and invested his life savings in a biotech startup to find treatments for the disease. The company, later acquired by Genzyme, created therapies that have prolonged his children's lives. Crowley's family was the inspiration for the recent Harrison Ford movie Extraordinary Measures, and Crowley is the author of a new memoir, Chasing Miracles. In the latest of his series of interviews as part of NEWSWEEK's partnership with Kaplan University, NEWSWEEK chairman Richard M. Smith spoke with Crowley, now CEO of Amicus Therapies. Edited excerpts:

SMITH: Megan and Patrick were less than 2 years old when they were diagnosed with Pompe disease. How are they doing today?

CROWLEY: They're great. We were originally told they wouldn't live to be 2, and then maybe 5 or 10. [Thanks to] the medicine that's been developed, Megan just turned 13, and Patrick is turning 12. They're our little miracles. They still face challenges. Pompe is a neuromuscular disease that affects not just skeletal muscle but breathing and cardiac muscles. The medicine reversed the life-threatening enlargement of their hearts--it's certainly extended their lives, but they're still special kids and they're still in wheelchairs. We continue to work with other people on looking at newer and better medicines to keep extending and enhancing their lives.

Joining the biotech startup required you to be away from your children, which must have been a wrenching choice.

That was the toughest part. It wasn't leaving a good job or a career path--you can always step back on a career path--it was being away 80 or 90 percent of the week for a long time. It ended up being nearly three years. Was it worth it? Probably.

What advice would you give to managers with employees who have a family member with a disability?

It's essential that you have sympathy and flexibility. Depending on the severity of the child's special needs, they're not going to be able to be a typical manager or a typical employee, but hopefully they've got a lot to contribute. …