Q: Please describe your experiences related to being diagnosed and treated for a primary brain tumor (meningioma) in the prime of your professional career.
A: In August 1997, I was first informed that I had a primary brain tumor called a meningioma. Additionally, I was told that I should schedule “brain surgery” immediately. It will come as no surprise that I was overwhelmed with fear and anxiety. Moreover, I experienced a period of despair. This news came at a time when I was involved in a new technology start-up and when I was more physically fit than I had been in years.
Once I pulled myself together, my family and I began to research as much as we could about meningiomas with the help of a group of supportive friends and colleagues. We also sought out the neurosurgeons who were most experienced in performing the surgical procedure needed to remove my tumor. I became a patient of Dr. Peter Black, one of the world’s leading neurosurgeons and a specialist in treating meningioma. Following my operation, I became determined to start the path toward recovery, both physically and emotionally. Several months into my recovery, I confronted that fact that meningioma can reoccur despite successful surgery. It really hit home when a nurse informed me that “once I became a patient of Dr. Black, I would always remain a patient of Dr. Black.” I decided then that I would play a more active role in finding a cure, not just for myself but for all brain tumor patients.
Q: Why did you start the Brain Science Foundation?
A: During my post-operative treatment, it became increasingly evident to me that there were many more incidents of brain tumor than I had ever imagined. Additionally, as a patient, I was frustrated by the fragmented nature of the information sources available to me and my family. In discussing this situation with Dr. Black and others at the Brigham and Women’s Hospital, I learned that there were limited resources available to advance research and treatment that could improve the rate of curing primary brain tumors, and even better, prevent them all together.
The more I learned the more I appreciated that there were many dedicated professionals in the field, but that generally their work was under-funded. It also seemed to me that research and treatment could be further accelerated with more purposefully managed financial support that places very high requirements for performance, timetables, and results upon scientists and doctors. My family’s philanthropic giving seemed insignificant both in its level and its potential to yield significant outcomes. The Brain Science Foundation was established as a more formidable entity to carry forth the objectives, goals, and activities that my family and I initiated.
Q: What is your greatest hope for the Brain Science Foundation?
A: We hope that the Brain Science Foundation will be a catalyst for new research about the causes of brain tumors and for the development of innovative ways to treat these tumors. Ultimately, we hope to play an important role in discovering ways to prevent brain tumors. We want to increase public awareness about brain tumors and increase the financial support, as well as to attract the brightest minds, promote the most promising research, and accelerate clinical application of brain tumor discoveries.
We hope the Brain Science Foundation will inspire others to focus a portion of their personal philanthropy on this issue. We welcome the involvement of those who wish to engage with us directly in our support of Dr. Peter Black. We also welcome the interest of those who care about supporting this type of work in other hospitals, laboratories, and non-profit organizations and who would like to draw upon our evolving expertise to help them in their giving. I was fortunate to be able to have access to the finest care possible. I can envision a future when every patient has an opportunity for quality care and a high quality of life and, perhaps a bit further, I see a future when brain tumors are rare because of extraordinary work that has been supported, at least in part, by the Brain Science Foundation.
