Guest Post: Private Foundations – Making a Difference in Moving Research Forward
Today’s guest post about the importance of funding for research comes from Catherine Ivy, Founder of the Ben and Catherine Ivy Foundation.
My husband Ben and I shared the value that it is important to give back to the community. For several years, we often discussed our philanthropic interest in health care and education. Unfortunately, the focus of our foundation became painfully clear when Ben was diagnosed with a glioblastoma multiforme (GBM) in August 2005 and passed away four months later in November 2005.
Upon Ben’s diagnosis, we found ourselves immersed into a new world. Both Ben and I were financial planners – not doctors or scientists. We had to learn an entirely unfamiliar (and very technical) language, but took it upon ourselves to discover everything we could about brain cancer research.
We discovered that, as they affect fewer people, rare diseases are funded at lower levels than other diseases and despite the fact that GBM is the most aggressive brain tumor, no life-saving treatments existed. We started the Ben and Catherine Ivy Foundation to motivate top researchers and spur the development of better diagnostics and treatments that will lead to long-term survival and a high-quality of life for patients with brain tumors.
It has become clear to me how much our financial planning backgrounds can be applied to the Foundation and the way we fund research. While we provide funding for research, we do not give gifts. We view our funding of research projects as an investment in a partnership with an expected rate of return measured by milestones and results.
Ben was not afraid of risk, which is why we will not only fund science of merit but also “riskier” science. We embrace what others may consider “failure” as a means to learning and moving the ball forward and intend to be as transparent as possible by sharing our mistakes and lessons so they will not be repeated. In our first year alone, we have funded research in genomics, targeted therapies and cancer stem cells.
We encourage others in the brain tumor community to contribute their lessons learned as well. By sharing what we have learned, we can create efficiency so mistakes are not duplicated and we can focus on new and potentially beneficial approaches. Collaboration creates synergy, leading to faster progress which will ultimately benefit the patient.
Our ultimate goal is to cure this disease but our immediate goal is to improve diagnostics and treatment. I view my role as a private funder as one part of a large network of researchers, organizations, institutions, companies, patients and caregivers all working together to fight this disease.