I Choose to Live Foundation--Case Study

I Choose to Live Foundation—One Man’s Vision to Form a New Charity

John Buck was a man with a mission and a vision, and he wasn’t going to let anyone stand in his way until he got what he wanted. Whatever it was. Whether it was finding a wealthy, socially connected spouse; getting his MBA from Columbia; helping his wife raise twin boys; furnishing a small yet tasteful summer home in the Hamptons; or winning his age group in the New York Marathon (actually, the best he could achieve was third, but he resolved to train hard enough to move up in the national Master’s road race rankings each year).

Regardless of the goal of the moment, he focused on it with the concentration of a Zen Master and did whatever it took to achieve his objective—often taking no prisoners. At 60, he felt he was in the prime of his life, and he often referred to his wife of 35 years, Stacy, an attorney who specialized in family law, as his “trophy wife,” although she was his first and only love.

He conceded to himself that he often ruffled some feathers, but he had minimal patience for those who found objections, usually specious, for his aggressive problem-solving. Whatever he got involved in, he did so in a manner that did not leave very much out of his control, either at work or managing his personal life.

When he was diagnosed with prostate cancer two years earlier, he initially assumed that he was beginning a downward spiral that would end in a slow, painful death. He was taken totally by surprise by the diagnosis. He had had a routine PSA blood test at the age of 55 to diagnose the presence of an antigen that often shows up in those with this cancer. It had been negative, but even with a positive test, many doctors recommended against aggressive responses because prostate cancer tumors are often so slow developing that most men with this cancer will die from other causes. Regardless, he had learned that prostate cancer was the most common form of cancer among men in the U.S. and the second leading cause of cancer death among men, with only lung cancer having a higher rate.

It was not a positive blood test but rather some difficulty urinating that had triggered the diagnosis, which was confirmed after a biopsy.

Upon hearing the diagnosis, John didn’t spend a minute wallowing in self-pity. Rather, beating the disease became another challenge, even when his long-time primary physician had suggested that he might consider simply letting the disease take its course. In consultation with an oncologist he knew from his running club, John had some radiation treatments, took hormones, and eventually underwent surgery to remove his prostate. After a six-month absence, he resumed his running workouts.

Inspiring him to not only survive but to thrive was Lance Armstrong, who at the age of 25 overcame testicular cancer that had spread to his lungs and brain and a prognosis of having only a 50% chance of survival to become one of the greatest athletes in modern history. Almost every day, before his workouts, John would visit the Lance Armstrong Foundation Web site at http://www.livestrong.org and create a virtual bond with this icon of the bicycling world who also competed alongside him, somewhere in the crowd, in the New York Marathon.

John networked with other upper middle-class male prostate cancer survivors in Northern New Jersey where he lived and in the Big Apple, where he still worked a modified schedule. Many men he spoke with had survived much longer without the return of cancer, some for as many as ten years. Unlike John, some had gone through the five stages of grief after learning of their diagnosis. Many had suffered bouts of depression. Some had retreated from their friends and families, losing their zest for life. For those with advanced forms of the disease and who were in chronic pain, morphine was one drug of choice. Some turned to an overdependence on other drugs, both prescribed and those that were not, to relieve their physical and psychic pain.

Occasionally, someone in his network died. John’s mother had died of breast cancer when she was 60. John remembered that Mom had spiraled into depression, shutting herself off from family and friends, isolating herself in her Manhattan apartment with only a mangy cat for companionship, never venturing out to enjoy what life could offer one even in the clutches of the late stage breast cancer that claimed her life prematurely. The cancer had metastasized to her bones, lungs, and liver. She became emaciated, and her spirit had been ravaged along with her body. John had watched his mother die slowly, receiving daily reports from the nurse whom he had hired to care for her while John managed his hedge funds, earning more in a week than his Mom earned in nearly a lifetime—at least until the Madoff scandal and the economic meltdown of 2008-2009 had encouraged his clients to seek more secure, stable investment options, if they had any assets left to invest.

These men with prostate cancer with whom he networked became his friends and extended family. They would meet in the City to attend Knicks games at Madison Square Garden and have dinner afterwards at trendy, expensive restaurants on the West Side. And they would talk. What they had in common was a resolve not to let cancer claim their spirit and zest for life.

John recognized the therapeutic value of being with others who shared the unique experience of being diagnosed with this killer disease. And he also saw that the stress of this disease accrued not just on the men struck by cancer but on their families.

One of his friends suggested organizing a trip to see the Broadway musical “In the Heights” for nearly a dozen men with advanced stages of prostate cancer in and around John’s bedroom community of Harristown, New Jersey, a short 25-minute train ride to Grand Central Station. This might possibly be the last opportunity for independence for some of them before the disease claimed their lives. Most of these men were like John—professional men who would not give a second thought to buying a new suit for $800 if it was both fashionable and functional. But John knew that other men on the invitation list would be making a major financial sacrifice to accept the invitation, and some men were unable to afford the trip at all. Many had lost their livelihoods as a result of their cancer diagnosis, and others were victimized by the economic recession the entire country was sinking into beginning in 2008.

John didn’t hesitate in writing a generous check to subsidize the trip for several men whom he knew would not be able to afford to accept this invitation. But this spontaneous philanthropy planted a seed of an idea. Why not start an organization that would be the conduit of charitable contributions for this purpose? At least this way, the funds he was providing out of his own pocket would be tax deductible. And there were hundreds of men who might benefit from programs that would focus on letting those with prostate cancer have some fun and enjoy the precious little time they had left, when most money directed to the issue of prostate cancer seemed to be focused on finding a cure. And unlike the days when his own mother was diagnosed, new drugs and treatments afforded thousands of men and women diagnosed with cancer much better odds for survival, and for longer periods.

John latched on to his idea as if it were a new toy. His wife was smart enough not to discourage him, not that there was anything she could have said that would have convinced him to drop the idea. First, he would begin raising money so he could quit his job as a hedge fund manager (the firm was going under anyway, and employees were talking among themselves about how to negotiate severance packages) and be the full-time director of this new program. Second, he would need to form a board of directors for him to lead. It would have to be a small board, and not have anyone who would interfere with his vision. His wife would be a good choice for Vice-President, he thought, as she was an attorney, and that would come in handy for handling all of the legal affairs of this new organization. Their twin boys, now grown, and one daughter-in-law would also provide some valuable skills and be excellent board members. (He and his wife were not on speaking terms with the other daughter-in-law, after his wife got into an irreconcilable disagreement with her over the color of bridesmaid dresses.)

And perhaps a couple of the men from the network would make good board members, provided they didn’t try to run things and would be satisfied with being major donors and finding others to donate. But if they did expect to have more than a cosmetic role, he would be assured of control of at least a majority of votes through his relatives, if anything ever came down to a vote or his influence to direct the activities and substantive programs of the organization was challenged. If that occurred, he would be assured of having enough power to throw anyone off the board who didn’t cooperate with his vision.

It has been pointed out by many that board members should be recruited who offer at a minimum, one of the three “W’s”: wealth, wisdom, or work. In John’s mind, the first was a priority, and any of the second or third attributes any of these individuals could bring with them would be gravy.

The ideas for making this dream become a reality were flowing, and he needed to get them down while they were still fresh in his mind.

He took out a pen, found a legal tablet, and started writing down what he would need to do to form his new organization, which he decided to name the “I Choose to Live Foundation.”

• Incorporate: New Jersey or NY?

• Recruit board members

• Write bylaws. Gotta keep everything under my control.

• Design a Web site. Reserve a domain name. Should have an area for men to leave their stories about their experiences with diagnosis and treatment and help others with questions. Needs an “Ask the Doctor” page.

• Prepare a fundraising plan. Need to register with anyone to do this? Can raise money at a dinner with a celebrity speaker. Can auction off sports memorabilia online?

• Open a bank account

• Apply for 501(c)(3) tax-exempt status. Does this cost any money??? Can Stacey do this?

• Make sure no one else is using this name. How do I do this?

• Find a celebrity (New York Rangers player?) to be an endorser/sponsor. Maybe a goalie who can help make a “stop” or a goal scorer can help score a goal of helping those with prostate cancer.

Discussion Questions:

1. If John came to you for advice on whether to start this organization, what would you tell him?

2. What would you advise John with respect to the governance model of his organization?

3. What problems might you see if he decides to apply on behalf of this organization for 501(c)(3) tax-exempt status with his current vision of organizational governance?

4. Would you expect this organization to still be around after 20 years?

5. If he did decide not to invest his time in starting a new organization focusing on providing entertainment options for men with prostate cancer, what other options might he have for achieving his goal of providing these services?

6. Should John’s organization consider providing its services to those with other forms of cancer?

7. What other tasks should be on John’s list of things to do when forming his organization?