#b#John Crowley#/b# and his wife, #b#Aileen#/b#, are known for their quest to help their children battle a rare, disease — a quest that was highlighted by the 2009 movie “Extraordinary Measures” and in Crowley’s book “Chasing Miracles.”

The two youngest of Crowley’s three children, Megan and Patrick, were diagnosed in 1998 with Pompe disease, a condition that causes a deficiency in the enzyme that breaks down glycogen. Its buildup in the body causes extreme muscle weakness. Pompe is related to muscular dystrophies and to other neuromuscular diseases like Lou Gehrig’s disease.

But beyond the red carpet of movie premiers and whirlwind book promotions is a couple committed to creating breakthroughs in other areas, not just medicine.

As Crowley, CEO of Amicus Therapeutics, a pharma R&D company specializing in genetic disorders in Cranbury, said in a recent interview, “We heard ‘no’ too often when the children were first diagnosed. We had to be persistent in order to make things happen.” As the couple demonstrated, there is a universe of difference between hearing no and accepting it. Perseverance proved effective in making the change necessary to forge a future for their children.

The Crowleys will present “Taking the Initiative to Make Change” at the Women’s Initiative of HomeFront on Friday, May 7, at 10:30 a.m. at Greenacres Country Club. Cost: $22. Call 609-883-7500 or E-mail ruthnnt@homefrontnj.org.

The Women’s Initiative is a cadre of active philanthropic females with a mission to invigorate giving for HomeFront, a Trenton-based nonprofit that combats poverty and homelessness.

A supporter of HomeFront’s mission for several years, Crowley sees many comparisons between his family and those served by the organization. “We relied on others over time and knew we had to repay that trust,” Crowley says. “Asking for help is hard. It’s humbling. I see HomeFront as embodying the recognition that you can’t do it alone. It is there to help people who have never had to ask for help before.”

Crowley’s father, a policeman in Bergen County, died unexpectedly when he was only seven. He, his mother, and brother suddenly had to cope alone. They were able to thrive because of the support of neighbors and the police “family.”

“I remember going to a bar,” Crowley says. “One where the cops hung out. I’d sit at the counter where there was a big glass jar with a picture of my brother and me on it. The card said ‘Help the Crowley kids.’ It was cool to see my picture but it was scary too. There was all this money in the jar and it was for us.

This was what communities did then, he says. Everyone pitched in to help, no questions asked. Crowley sees the approach taken at HomeFront in much the same way. “It’s non-judgmental,” he says. “It is there to help you get out of a tough situation but it’s not just a gift. They ask a lot of the people who come to them.”

Crowley graduated from Bergen Catholic High School in 1985 and attended the Naval Academy in Annapolis, Maryland, from 1986 to 1987. He then transferred to Georgetown, where he earned a bachelor’s in foreign service. He and Aileen, high school sweethearts, married in 1990.

Crowley graduated from the University of Notre Dame Law School in 1992 and worked for the health care practice group of Bingham Summers Welsh & Spilman in Indianapolis. He then earned an MBA from Harvard Business School in 1997. His first job in business was with a management consulting firm in San Francisco.

Megan and Patrick were diagnosed with Pompe disease in 1998, compelling the Crowleys to move to Princeton to be close to doctors specializing in the disease. Crowley worked at Bristol-Myers Squibb, where he served in a number of management positions, but grew frustrated with the slow pace of research on Pompe disease. He left BMS in 2000 to become CEO of Novazyme, a biotechnology research company located in Oklahoma City that was conducting research on a new experimental treatment for the disease.

In 2001 Novazyme was acquired by Genzyme Corporation, the world’s third largest biotechnology company, as part of a plan to infuse Pompe research with deeper pockets. Two years later Megan and Patrick received enzyme replacement therapy developed by Genzyme.

Crowley then became president and CEO of Orexigen Therapeutics in 2003, and then of Amicus in 2005. He also serves in the United States Navy Reserve as an intelligence officer.

Today Amicus has a Pompe treatment in the most preliminary stages. The company is also working on treatments for two other rare diseases. They are Amigal, for Fabry disease; and Plicera, for Gaucher disease. Amigal is soon to start Phase III testing, and Plicera is in the middle of Phase II, which are the early stages of clinical trials.

In research partly funded by a grant from the Michael J. Fox Foundation for Parkinson’s Research, Amicus scientists have unraveled the biochemical links between Gaucher’s disease and Parkinson’s, following up on a National Institutes of Health public paper reporting that carriers of Gaucher’s disease are at 5 to 10 times the normal risk of developing Parkinson’s disease.

Last February Amicus had to suspend a Phase II study of its oral drug for Pompe disease after two patients suffered serious side effects, and in October the company’s third-quarter report indicated that a two-year partnership with Wayne-based Shire Pharmaceuticals had ended and will require the company to let go of workers. Currently the company has about 100 employees, down from a high of 120.

Crowley was introduced to HomeFront three years ago by Don Hoffman, recently named chairman of the Princeton Healthcare System board of trustees and managing partner of Crystal Ridge Partners, a private equity firm formerly located on Nassau Street. “I saw an organization with good leadership, with an innovative, entrepreneurial approach to an age-old problem,” Crowley says. “This model should be branded so that it can be reproduced in other cities and states.”

And it just might be. Crowley has already discussed the concept of cloning the HomeFront model with friend Cory Booker, mayor of Newark. Booker, frustrated with the legacy spending programs that try to address the problem of homelessness in Newark, has expressed interest in studying HomeFront more closely in part because it emphasizes self-sufficiency over handouts.

Crowley points to several steps that can crystallize charitable giving at any level.

#b#Pay it forward#/b#. Change does not come from talk. “Giving changes the perspective of the giver,” Crowley says. “The very act of giving gives back.

Narrow your vision. There is always a way to give. It can be money; it can be time; it can be expertise. “The key is to do things, to move,” Crowley says. “There are only so many hours in a year. You have to allocate your hours to family, to work, to exercise, to community.”

Crowley’s advice to the too-busy executive or other stretched-too-thin parent is to narrow the focus of what you can do. If you can do this, you will find the time to get things done. Find one part of the mission of the group you want to support. Acknowledge that you cannot be all things to all people and do one thing well.

#b#It’s never too early to start#/b#. Crowley does not include his children in the grant-making decisions of the John F. and Aileen A. Crowley Foundation but he is teaching them that philanthropy is more than an occasional thing. He routinely gives his children and their cousins age-appropriate sums and asks them to research where they want the cash to go. In this way, the concept of giving becomes part of life’s obligation and not just something that happens if you have a few extra dollars at some point.

“There is always something that can be bought,” he says. “But charity has to be part of a budget as much as anything else.”

#b#Do your homework#/b#. Make your charitable dollars work hard. With so many causes vying for attention, how does anyone decide which to choose?

Crowley does homework on each organization he considers supporting. “Look to the leadership, analyze the mission, understand how much is achieved with the resources at the organization’s disposal” he says. A small, well-run charity can have a bigger effect than a behemoth bureaucracy with a large overhead. Websites such as Guidestar and Charity Navigator have a great deal of information about most charitable organizations and are good starting places.

#b#It’s OK to say no#/b#. There are so many causes and so many pleas for help that there is a point at which philanthropy becomes too scattered and too diverse.

Ask some questions: Does the family want to benefit large national organizations or focus locally? Is there a sector, such as medical research or social services, that speaks to the members of the family more than another sector does? By knowing where the family’s giving will do the most good in terms of the family’s goals, their charitable resources are not spread too thin.

Organizations can count on regular donations and the family has the satisfaction of constant follow-through. At the same time, reacting to each solicitation from supported organizations only causes other time commitments to suffer. Zeroing in on specific efforts keeps things in balance.

With major demands on his time and attention, Crowley can appreciate the efficiency and effectiveness he has seen in HomeFront’s entrepreneurial model. And given that HomeFront has been pursuing its mission for more than 20 years, the organization appears to exemplify the title of the second chapter of Crowley’s book: “Never Quit.”

Whiting, a U.S. 1 contributor, is also a volunteer for HomeFront.

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