…Nick Stump is a recent college graduate who in many ways was just getting his life started when it was discovered that he had a particularly rare form of brain cancer called malignant meningioma. He went through a grueling 12-hour brain surgery and, afterwards, a very difficult regimen of radiation therapy. None of this was curative and his tumor returned three years later. For someone with an aggressive brain tumor that grows quickly across the brain despite maximal treatment, he had limited treatment options left. Fortunately, he was eligible for an Ivy Phase 0 clinical trial. Once enrolled in the trial, a new drug recently developed for breast cancer was matched to the genetics of his tumor. He started taking the experimental drug a week before his second surgery, and afterward the team determined the drug appeared to have effect in his tumor. A year later, he is still disease-free and starting a new job. Ordinarily, this type of brain cancer returns every few months and can be fatal. His pathway is now different.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Catherine Ivy. Catherine is responsible for the administration, investment management and charitable grant-making of the Ben and Catherine Ivy Foundation. She monitors and participates in the design of the overall grant-making strategies and policies emphasizing the needs of brain tumor research. A Certified Financial Planner, Catherine worked in the financial planning industry for over 24 years. Prior to becoming involved in the brain tumor community, she served as owner and president of Ivy Financial Planning and Associates in Palo Alto, California. She has a Master of Science degree in personal financial planning from Golden Gate University and a Bachelor of Science degree in finance from Arizona State University. Catherine has a very personal interest in this work. She became involved in the brain tumor community when her husband, Ben Ivy, lost his battle with glioblastoma brain cancer in 2005. Since 2005, Catherine has led the effort of the Ivy Foundation contributing over $91 million to brain cancer research. She currently continues her efforts to support research on brain cancer, leading to the development of better diagnostics and treatments that offer long-term survival and a high quality of life for patients with brain tumors. Catherine serves as a member of the Mayo Clinic Arizona Leadership Council, a board member of the Board of Directors of the Translational Genomics Research Institute (TGen) Foundation and is a member of The Philanthropy Workshop (TPW). Catherine has been on the Advisory Board of the Barrow Neurological Institute, the Advisory Council of the Society of St. Vincent de Paul and the Advisory Board of PathNorth. She also had been on the Advisory Board of the National Brain Tumor Society and served on the External Scientific Committee for The Cancer Genome Atlas (TCGA) with the National Institutes of Health.
Thank you so much for doing this with us Catherine! Can you tell us a story about what brought you to this specific career path?
Fourteen years ago, I was hiking with my husband Ben when he started to complain about numbness in his thumb. He was an extremely healthy person so at first we brushed it off as a pinched nerve. However, the numbing feeling continued to persist and that’s when we agreed to get it checked out by a doctor.
We were blindsided by the diagnosis that Ben had an advanced type of brain cancer called glioblastoma multiforme (GBM). He survived four months from the day of his diagnosis. That was an extremely difficult time because paralysis and other unpleasant symptoms hit him very quickly. Within six weeks, he couldn’t walk, talk, eat or write. While I have grieved the loss of a wonderful husband and my best friend, I equally grieved his physical suffering during those four months. Glioblastoma is considered one of the most deadly and fastest growing cancers. With the exception of one chemotherapy drug, there have been no breakthroughs for this disease in the last 50 years.
Before Ben’s passing, we made plans to create a private foundation that would allow us to fund projects that were near and dear to our hearts. After Ben’s diagnosis, it became clear the mission of our foundation would be to find a cure for brain cancer. Ben passed away on Thanksgiving Day in 2005. By January 2006, the Ben & Catherine Ivy Foundation was established. I feel fortunate to have the opportunity to support the evolution of treatments for brain cancer so others don’t have to experience what Ben did.
Can you describe how you or your organization is making a significant social impact?
Glioblastoma is aggressive and fatal. The average survival rate for a patient with glioblastoma is 15 months and this hasn’t improved in the last three decades. Time is precious and critical for these patients, yet many conventional clinical trials can take five to seven years to complete.
In 2013, the Ben & Catherine Ivy Foundation started funding Phase 0 clinical trials at the Barrow Neurological Institute to accelerate drug discovery for brain cancer. With this unique trial design, a patient is given a small dose of a drug combination chosen to match the genetics of their individual tumor, days before surgery. These drugs are newly-developed and often being tested in brain cancer patients for the first time. After surgery, it is determined within 10 days whether the therapy reached the brain and hit its intended target. If yes, the patient will continue on the experimental regimen at a higher dose and if not, the patient can advance to another clinical trial without losing any time.
We saw so much promise in these studies that last year we committed to a $50 million investment that would scale up the effort and establish the Ivy Brain Tumor Center. The Ivy Center’s Phase 0 clinical trials program is the largest of its kind in the world and enables personalized care in a fraction of the time and cost associated with traditional drug development.
Can you tell me a story about a particular individual who was impacted by your cause?
Nick Stump is a recent college graduate who in many ways was just getting his life started when it was discovered that he had a particularly rare form of brain cancer called malignant meningioma. He went through a grueling 12-hour brain surgery and, afterwards, a very difficult regimen of radiation therapy.
None of this was curative and his tumor returned three years later. For someone with an aggressive brain tumor that grows quickly across the brain despite maximal treatment, he had limited treatment options left. Fortunately, he was eligible for an Ivy Phase 0 clinical trial. Once enrolled in the trial, a new drug recently developed for breast cancer was matched to the genetics of his tumor. He started taking the experimental drug a week before his second surgery, and afterward the team determined the drug appeared to have effect in his tumor. A year later, he is still disease-free and starting a new job. Ordinarily, this type of brain cancer returns every few months and can be fatal. His pathway is now different.
Are there three things the community/society/politicians can do help you address the root of the problem you are trying to solve?
- Awareness of the staggering statistics and lack of progress in brain cancer research, despite advancements in many other cancers.
- Ease of access to clinical trials by the general public.
- Incentives to pharmaceutical companies to share drugs equally among research institutions.
The Ivy Brain Tumor Center was designed to address all three of these unmet needs.
How do you define “Leadership”? Can you explain what you mean or give an example?
I’ve been fortunate enough to be around many great leaders over the years and my biggest takeaway is that their effectiveness is defined by setting an example through action. As they say, actions speak louder than words, and when a leader can execute judicious decisions that focus on the mission of the organization, that is when they succeed.
Through my foundation, I have tried to embrace this type of leadership and it’s why after 14 years, we continue to fund some of the most cutting-edge brain cancer research in the world. We haven’t strayed away from our mission to find a cure for brain cancer — we stick to one thing and we stay focused.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. :-)
I would love to continue the momentum that the brain cancer community gained from National Glioblastoma Day this past July. We’re dealing with a disease that unfortunately does not get the spotlight it deserves. It wasn’t until the passing of Senator John McCain that people started to have more conversations around glioblastoma and national leaders started to take interest.
Brain tumor patients don’t survive to participate in marches and walks like other cancers, which means in many cases they just don’t have the representation. We need raise awareness and political participation. If we can get more funding to support brain tumor research initiatives, coupled with legislation, that would push the pharmaceutical industry to share their drugs quickly and equally among research institutions. Achieving this could have such a positive impact and bring us one step closer to finding a cure.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“Follow and trust your intuition.” I will never have all the right answers; however, experience has revealed to me that a clear and quiet mind can deliver reliable direction.
Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. :-)
I would love the opportunity to speak with Cindy McCain. When you watch your significant other deal with a disease as devastating as glioblastoma, you become part of a very small group of people in this world who can relate to the pain that comes with losing someone in this way. I think as two women who have a platform, it would be great to sit down and discuss different ways that we could potentially collaborate or partner. So hopefully, in the future, no one will have to be put in the same situation we were.
How can our readers follow you on social media?
This was very meaningful, thank you so much!