“The Last of Human Freedoms is the Ability to Choose One’s Attitude in a Given Set of Circumstances”
– Viktor Frankl
Rick and Susan Sontag grew up in Long Beach, California and have known each other since the 9th grade. They were both in the same high school graduating class but never dated during grade school. Susan was the more diligent student. She was the salutatorian of their high school class of 750 students. After graduation, Susan went off to the University of California at Berkeley while Rick headed to Harvey Mudd College in Claremont, California. A short time later, Susan transferred to Pomona College in Claremont where she and Rick met again and they dated for the first time. They were inseparable after that.
After they both graduated from college they were married. Rick went on to graduate school while Susan worked as a court reporter to support them. Rick graduated from Harvard Business School in 1968 and held several marketing positions over the next ten years. But he was dissatisfied with corporate life and ended up being terminated from jobs three times, the last time in 1978. At that time, they were living just north of Rockford, Illinois. Frustrated by his dismal corporate experiences Rick told Susan that he probably didn’t fit in the corporate environment. Maybe this was a good opportunity to work for himself by finding a company to buy and becoming an entrepreneur. Of course, they had not much in savings and would have to start all over again. But Susan enthusiastically supported Rick and encouraged him to do it. Rick then ventured out to find a company to purchase.
His first two attempts to buy a company were miserable failures and wasted cash and time. After nearly two years of searching and no source of income their financial reserves were running low. Finally in late 1979 Rick found a small aircraft parts manufacturing company in Rockford that fit the bill, but it unfortunately was in the process of being purchased by a group of investors. Then by some miracle that purchase fell through and Rick was able to line up two venture capital investors and a local bank to make the purchase. That purchase was consummated in 1980. They renamed the company Unison Industries. Rick and Susan put their life savings of $50,000 into the purchase and took on the two venture capital equity investors as well as nearly $8 million in debt which they personally guaranteed. The acquisition closed just before the major world recession of 1980-1982 when bank prime interest rates rose to over 20%. Not an auspicious start.
One of Susan’s favorite world leaders is Winston Churchill. She particularly likes one phrase attributed to Churchill where he summarized his philosophy for guiding England through World War II. That phrase is “never give up.” It became the operative phrase for Rick’s business struggles and their later life.
Due to the recession, things at Unison had a disastrous beginning. Sales plunged over 50%. Manufacturing issues caused product problems that impacted the safety of airplanes. The company’s financial condition became precarious, and the company was in the survival mode. Rick had no choice. He had to lay off over 50% of the work force and cut other operating expenses to the bare bone. Times were very tough, but Rick and Susan never gave up.
Undeterred by having three children at home, Susan volunteered to work as Rick’s assistant at the company for a couple of years to help Rick while he straightened out problems. After three years of hard work there was light at the end of the tunnel. By 1985, Unison was stable and growing again.
In 1990, Unison was doing well enough that it acquired an aircraft components operation of Allied-Signal Corporation that was five times its size. With that acquisition, Unison moved its headquarters to Jacksonville, Florida. Unison continued growing, and by 1993 had 500 employees and sold products to over 100 countries around the world. Their family was doing well. Life was good.
On June 24, 1994 Rick and Susan’s world collapsed. That night Susan had a stroke. When she awoke the next morning, she had lost her short-term memory, was confused, and began having seizures. A short time later, she was diagnosed with an anaplastic astrocytoma, an aggressive form of brain cancer. Doctors told Rick she had a life expectancy of around 3 years. Rick was desperate to try a proper course of treatment for Susan and spent countless hours trying to educate himself on the disease and its treatment. It was a frustrating experience, because not much information or help was available. He did not give up, however, and eventually got her entered into an experimental clinical trial with a very severe treatment regimen. By some miracle Susan survived, although she continued to have seizures as well as serious cognitive and physical issues.
Rick’s whole experience with Susan’s medical emergency, the diagnosis of a terminal form of brain cancer and the uncertainty of not knowing whether he had made the right decision on a course of treatment made him realize that something needed to be done to improve this situation for others facing the same problem. So he made a promise to himself. He vowed, “if I ever get the opportunity to do something about this horrible disease and its effect on patients and caregivers, I’m going to do it.”
Over time Susan’s tumor turned to non-cancerous scar tissue. She was reasonably fit but had ongoing memory and competency problems that impacted her independence. However, with a caregiver by her side Susan was able to begin to participate in more activities. Despite her limitations, Rick was determined to provide her as normal a life as possible. While Susan was still physically able they traveled extensively and maintained their personal and business relationships. The people around them understood Susan’s limited capacity and adjusted accordingly. And to those not knowing the true situation, they appeared to be living a relatively normal life.
Over the next several years Unison continued to grow. By 2001, it had grown to 1,500 employees and $200 million in worldwide sales. That year Rick was approached by one of Unison’s customers, General Electric, who was interested in acquiring Unison. GE’s timing was right, and Rick negotiated with them to sell the business. In 2002, the sale closed. Finally, Rick had his opportunity to do something about brain cancer.
After the GE acquisition, Rick and Susan took part of the sale proceeds and formed The Sontag Foundation. They, along with two of their children, Fred and Cindy, were the initial Board of Directors. They hired an Executive Director and chose to fund brain tumor research as the foundation’s main mission. While The Sontag Foundation has expanded into some other activities over the years, the funding of research related to brain tumors is still its main mission. It has grown into one of the largest funders of brain tumor research in North America.
Rick and Susan didn’t stop at funding brain tumor research. Rick remembered the total frustration he had as Susan’s caregiver trying to locate the best treatment option for Susan and finding information about coping with the effects of the disease. His experience led the Foundation to begin helping patients too. It started in 2004 when the Foundation established a Brain Tumor Support Group in its home turf of Northeast Florida. Every month thereafter up to the present day a group of brain tumor patients and their caregivers meets in Jacksonville to discuss the issues associated with living with a brain tumor – topics like dealing with the effects of brain surgery, seizures, falling, memory loss, driving or insurance problems. The Northeast Florida Brain Tumor Support Group is now one of the largest brain tumor support groups in the US. And Rick and Susan have personally attended almost every meeting since the group’s beginning.
These support group meetings gave the Foundation staff a deep understanding of how to help brain tumor patients with their assortment of problems. Also, as the Foundation became more established in funding brain tumor research, patients and their caregivers from around the US began to call the Foundation staff to inquire whether they could help them find clinical trials or second opinions – or just explain how to find better information to aid them in dealing with the disease. Since the Foundation was familiar with the work of numerous brain tumor clinicians and researchers around North America, Foundation staff soon found themselves consulting with this network of specialists in order to help patients throughout the country – and occasionally in foreign countries as well. After doing this ad hoc for a number of years it became clear that the frustration Rick felt in 1994 in trying to understand the disease and locate the proper treatment for Susan was still a major problem for others. Over time it became obvious. There was a crying need to do this kind of patient support on a full time, organized basis. So in 2014 Rick and Susan formed a new national non-profit entity called The Brain Tumor Network. The Brain Tumor Network was established as an independent organization, but Rick and Susan made sure it stayed closely tied to The Sontag Foundation. Its main mission is supporting brain tumor patients.
The Brain Tumor Network started with one nurse navigator from Mayo Clinic and has grown steadily since then. It now comprises a large group of medically knowledgeable nurse navigators, social workers, medical records people and support staff – all with the mission of helping brain tumor patients. This group is supported by custom information systems and is connected to the entire medical network of The Sontag Foundation. Brain Tumor Network staff help patients throughout the US find their way to more effective treatment as well as cope with the practical problems of living with the disease. The Brain Tumor Network has become one of the largest organizations of its kind in the US.
It’s been a long and tough road for Rick and Susan. And not one they anticipated when they got married. They could have thrown in the towel and quit a number of times. But they chose not to give up. The results of that decision speak for themselves.