A Passion Greater Than Profit

My son's illness transformed me into an entrepreneur of sorts -- not for personal profit, but to raise the funds for finding a cure

By Jeff Schwartz

In July, 2003, the charity my wife Ellen and I founded in 1998, Jacob's Ladder, held its largest fund-raiser, a family fun day at an amusement park in Toronto. In planning for the event and in the days that followed, we began to realize how much we had accomplished. The funds raised (nearly $700,000 over five years), the ease with which sponsors -- really big sponsors, such as Starbuck's (SBUX ) and two major Canadian banks -- came on board, the outstanding volunteers, the warm wishes conveyed, and the pats on the back were more than we could have ever expected.

On May 17, 1997, our first child, Jacob, who is now 6 years old, was born with a rare genetic neurodegenerative disorder called Canavan's Disease. When he was four months old, we learned of his condition, and our lives changed -- forever. We began asking questions, and the only answers we got from his doctors were: "No, he won't be able to do that," "No, he won't likely live that long," and "I don't know, there isn't sufficient history or information available."


  The path in front of us suddenly had hit a fork. We could go one way and retreat within our immediate family, or we could go another way and take our story public, opening our family life to scrutiny. The latter course might help in some way to assure that what happened to us doesn't happen to anyone else. Thanks to my wife, and the overwhelming support of family, friends, and our community, we chose the latter. I can say, without hesitation, that it was the right choice.

The choice I made might be helpful for other entrepreneurs to consider if they wish to extend their company-building talents into the nonprofit milieu. The lesson in our story is that if the passion is there, you can make the time in your day to participate in these worthwhile endeavors. In my case, I had always supported causes for which I had felt a personal connection. When my mother passed away as a result of cancer many years ago, for example, I became an avid supporter of cancer-related organizations.

The other lesson for entrepreneurs is that the passion that results from supporting causes that speak intimately to you unleashes your business skills to do more than just write a check. Indeed, when I made the fateful decision to go public, the entrepreneur in me was directing me to start something from scratch, nurture an idea, and bring it to market. The result was the founding of our charity, Jacobs Ladder, in March, 1998. I now serve as president and a member of the board, while my wife takes a lead part in organizing the fund-raising events we hold twice a year.

Having channeled my entrepreneurial energies into a cause that speaks personally to me, I am also able to advise entrepreneurs that the process involves several distinct steps, such as the need to accept and move beyond the personal issue, share your story (as I ultimately agreed to do), set goals, and, finally, keep some energy in reserve for yourself. What follows is a discussion of these.


  I've given you the abbreviated version of the story that led to our critical decision to go public. Along the way, we needed to face several meaningful issues. To begin with, both Ellen and I had to accept our son's illness and move beyond it. Easier said than done. It meant that we had to embrace everything about our altered lives, including falling head-over-heels in love with someone only to have that person taken away, one piece at a time. Then there was the one-in-four chance that our next child would be affected in the same way. The list goes on.

Once we had the positive avenue of our foundation in which to channel our energy, we knew that we had moved beyond acceptance and into the mindset of taking action. Very early on, we set out to learn how this tragedy could have happened, for example, and we discovered that screening for rare neurological diseases such as Canavan's, unlike better known illnesses, such as Tay Sachs, isn't a routine part of genetic counseling in Canada. That convinced us that we needed to advocate for including genetic screening for Canavan's Disease, and more broadly, for raising public awareness of this affliction and many other rare neurodegenerative disorders. The step of going public, which was critical if we were to achieve our goals, was harder for me than my wife. While Ellen gains strength from sharing, I tend to keep my personal problems to myself. However, if we were to make progress, I understood that I would have to share.


  Actually, after our first public appearance, talking about our situation became easier for me, largely because of the support we received. In fact, our very first fundraiser occurred because a coffee server at Starbuck's had recognized Ellen and Jacob on a television broadcast as the mother and son who frequented the shop. Within a week, that Starbuck's hosted an auction at the store, raising $10,000 for us in a single evening.

In the past five years, Jacob's Ladder has succeeded in ensuring that screening for Canavan's Disease is readily available in Ontario-based hospitals. Our foundation also has funded targeted research projects that, some day, may lead to a cure for Canavan's and other such diseases. In 2003, Jacob's Ladder received a Kauffman Community Award. Our work as a foundation, of course, won't be finished until cures are found.

Along the way, I have learned to value what has been a snowballing level of support for our foundation. However, I don't advocate that entrepreneurs make their nonprofit interests the whole of their lives. In my case, I spend about a half day a week working for Jacob's Ladder. While I recently left my job as general manager of AmTruck, a Toronto-based based buyer and seller of used commercial vehicles, I am currently evaluating a handful of intriguing entrepreneurial opportunities.


  Indeed, I believe that my work at Jacob's Ladder has helped me in my professional career. Prior to starting the charity, I found that, at times, I missed giving back to the community on a meaningful level, and, as a result, my life was unbalanced. What energy I had went primarily to the business -- and what was left over went to the family. The time I have spent on the foundation has allowed me a respite to attend to personal goals and recharge my batteries -- all of which will be invaluable when I resume my professional work.

In May 2002, Jacob reached a milestone in his life -- his fifth birthday. While Canavan's patients don't usually live beyond the age of 10, our doctors were particularly concerned about Jacob after he experienced an especially difficult period when he was 3 years old. Although the disease takes away something from him each year, he continues to be an inspiration for everyone who meets him. I can only hope that Ellen and I are able to similarly inspire people through our commitment to the foundation that bears Jacob's name.

Jeff Schwartz, 39, co-founded Jacob's Ladder, a nonprofit foundation named for his young son, who was diagnosed with a rare genetic neuro-degenerative disorder called Canavan's Disease, with his wife in 1998.

Entrepreneur's Byline comes to BusinessWeek Online readers courtesy of EntreWorld.org, a resource for entrepreneurs that is sponsored by the nonprofit Ewing Marion Kauffman Foundation.

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