John Crowley married his high school sweetheart. In the summer of 1997, they moved from the East coast to Walnut Creek just outside San Francisco. They moved for John’s new job as a financial consultant just after graduation. A few months later, he and his wife Aileen were living with their now three young children in their four bedroom home. John, Jr was three, Megan was 15 months and Patrick was just a week old.
Megan had been displaying a lack of upper-body strength, so they brought her to see a doctor. After a series of tests, a doctor informed them that Megan suffered from Pompe’s disease. It is a rare form of muscular dystrophy that affects only a few thousand worldwide. It is caused by an inherited genetic mutation which didn’t have any treatment. They soon discovered Patrick had the same mutation. Doctors told John and Aileen they’d be lucky if their children lived to see their second birthday.
Although John had just graduated that summer from Harvard, he owed $140,000 in student loans and had $40,000 of credit card debt. John was determined to find a way to save Megan and Patrick. He took to the web to find everything he could on research and studies on potential treatments. He then created the Children’s Pompe Foundation to raise money to accelerate getting research into clinical trials.
Physicians later told John and Aileen that Megan and Patrick had the less acute version of Pompe disease, which meant they would live to about their 5th birthdays. John became frustrated by the slow pace of getting scientific research into human clinical trials. He believed he was racing against time as the health of both Megan and Patrick was deteriorating.
In the spring on 2000, he helped create a new biotech company to develop a treatment for Pompe’s disease. In 2001, he engineered a sale of the company to Genzyme. At Genzyme, he became responsible for choosing between four different potential medicines for clinical trials. After the medicine was chosen, he resigned the company. He hoped this would eliminate any conflict for Megan and Patrick getting into a clinical trial that had to leave out many kids dying from Pompe.
In January 2003, 6 year-old Megan and 5-year old Patrick began receiving an infusion of the special medicine their dad helped create. Later that year, the medicine successfully reduced the heart sizes of both Megan and Patrick by as much as 50%. While the medicine didn’t reverse the damage that keeps them both in wheel chairs, it reversed the potential of heart failure, the eventual cause of Pompe related deaths.
In the 20th century, knowledge became the new power replacing hard work. In the 21st century, enablement became the new power once knowledge became online and freely available.
- 19th Century – hard work is power
- 20th Century – hard work & knowledge is power
- 21st Century – enablement is power
Our modern day era of the 21st century has brought accelerating speed of change, expanding complexity, and efficiency challenges to fit it all in. How hard you work and/or what you know doesn’t amount to what it did in the 20th century. It has become more about what you can create, build, and make happen (enablement). Although hard work and knowledge are essential components of enablement, they are often not enough.
Without what John made happen (enablement), several parents would have lost their children at very young ages. Although he was motivated by a dire mission, the enablement of his dream helps to illustrate how it’s done. Enablement is getting people, knowledge, funding and personal development to come together like an orchestra to make something happen.
People (decision makers, contributors) – the people you know are unlikely enough. It requires reaching out, creating collaborative relationships and securing support.
Knowledge – a good education is helpful, though this is the direct knowledge you need to make something happen. It is mostly learning as you go.
Funding – it is hard to make things happen without money. This usually requires convincing someone the money will be well spent.
Personal Development – it could be addressing needs of your family, your job or getting your personal finances in order.
John shows us how to address the enablement components to make almost anything happen:
Decision Makers – Food and Drug Administration (FDA), investors, scientists, hospital clinical trial review boards
Contributors – His wife Aileen, family, extended family, friends, doctors, nurses, scientists, employees, donors, his college network and teachers
Knowledge – Molecular biology, FDA approvals, scientific studies, biotech industry, venture capital investment, clinical trials, not-for-profit foundations
Funding – John had to generate income to pay for medical care of his kids and service his debts. John created the Children’s Pompe Foundation to raise money for a cure. He raised $40M to create the biotech company Novazyme. He sold the company for over $120M.
Personal Development – John had to learn to deal with stress and develop emotional support skills for his family. In the book, The Cure, author Geeta Anand shows John tempering his brash, Type A style by backing away from the fight to get Megan and Patrick getting into the clinical trial.
Source: The Cure: How A Father Raised $100M And Bucked The Medical Establishment In A Quest To Save His Children, by Greeta Anand, 2006, HarperCollins Publishers.