Tragedy to Hope

Tragedy has its way of reminding us that no day is ever promised. Oftentimes it changes us forever. For some, it becomes life’s beneficence.
Ben and Catherine Ivy, two very smart, successful financial planners, were the perfect couple. They were healthy, happy and in love. They recognized life’s blessings and wanted to find a way to give back to others.
In August 2005, after a hiking trip, the decision became very clear when Ben sought medical care for an unexpected numb thumb. The MRI revealed an aggressive brain tumor called glioblastoma multiforme (GBM). The doctor told him he had less than 18 months to live.
It became painfully obvious what they would spend their efforts doing. “His quality of life was taken so fast,” Catherine recalls.
The two began forming the Ben and Catherine Ivy Foundation to fund patient focused research on gliomas. While the ultimate goal is to cure brain cancer, the immediate focus is to double the life expectancy of patients within the next seven years.
“It was kind of ironic that Ben was diagnosed with a disease of the brain because that was his gift,” she says after describing him as a “charismatic” and “extraordinarily intelligent” man.
Four months later, he was gone and Catherine was left to carry out a difficult mission and a painful loss.
Catherine began traveling around the United States to all the major hospitals and the Pacific Northwest to scope out research options. While in Seattle, she met Neurosurgeon Gregory Foltz. The two had a common passion to fuel brain cancer research and treatment. They then formed the Ben and Catherine Ivy Brain Tumor Center at Swedish Medical Center in Seattle.
“If a person is diagnosed with a brain tumor in Seattle, they now have so many more options locally. It makes a big difference being close to home,” Catherine relates.
The purview of the privately funded Ben and Catherine Ivy Foundation supports risky, out-of-the-box research of merit. “There is a lot more to learn about this disease, but I feel like the needle is moving,” Catherine says.
The foundation’s research remains focused on areas of genetic screening as well as vaccine-related studies.
Currently, the foundation works with Translational Genomics Research Institute (TGen), a nonprofit biomedical research institute in Arizona that’s working to understand the genetics of the disease as well as translating those findings into treatment options. There are many ways that they can go about this. To start with, they might make use of things like a centrifuge tube, to see if there is anything obvious in a person’s blood cells or something to try and understand the disease better.. But moving on from this, they have to find ways to successfully study the brain (without taking the brain out, since this isn’t something that is possible).
“I am really trying to leverage and work with TGen, while trying to involve Barrow and Mayo,” Catherine says. “There’s a tremendous opportunity for the state of Arizona and for the patient.”
TGen’s project deals with personalized medicine and the study of genetic makeup to discover why two percent of patients are living longer than others.
The foundation’s goal is to find ways to get the patient to live longer in order to better understand the illness. “The brain can be complicated and can have so many more additional challenges than other organs. You can’t remove your brain to study it like you can some other organs,” she compares.
“I need measurable goals that are realistic and achievable.” she says. Science is an art and grey is very uncomfortable.”
The Ben and Catherine Ivy Foundation is now one of the largest privately funded brain cancer research foundations in the country. The foundation works with institutions such as the University of California San Francisco, University of California Los Angeles and Stanford.
Stanford’s approach to brain tumors uses advanced imaging to flag the tumor, allowing more precise surgery.
In the meantime, the Ivy Foundation continues to seek out the finest research and scientists. Most recently, Catherine’s travels have been to Europe, to inquire if collaborative research would enhance the results for the person diagnosed with brain cancer.
While the Ivy Foundation doesn’t accept direct donations like their medical partners, Catherine acknowledges how others can help. “I really encourage people to get involved when and if they can,” she says. “Whether it’s a walk or volunteering, it contributes.”
“Cancer affects the world, not just us. Our research is about delivering results to the patient. It’s about them. Not me or us. We will continue our efforts no matter how long it takes to make it happen,” she says.