The Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of patient families, clinicians and researchers as part of “Collaborative Corner”. If you would like to share your story as a guest blogger, please email email@example.com
Q&A with Brock Greene, Co-founder of Oligo Nation, and father of two sons who have experienced brain tumors.
Q: Oligo Nation is made up of families and friends of individuals who have experienced Oligodendroglioma. What is your family’s connection with this disease?
Brock Greene (BG): My two sons, Spencer and Zach, were diagnosed within two years of each other at the ages of 16 and 20.
Q: In navigating you sons’ brain tumor journeys, what were you most surprised to learn? How did these lessons spur you to found Oligo Nation?
BG: The biggest surprise was that literally no research was being done on our disease. Even the ‘brain tumor’ foundations were funding nothing (it all goes to GBM). And I came to understand that all the “breakthroughs” you read about in the paper mean nothing if they are not applied to your disease.
Q: Oligodendroglioma is rare, and especially so in very young people – occurring in less than 1% of pediatric brain tumor patients under 14 – but more often in teens and young adults. How does this present challenges in finding clinical trials or promising research advancements for young people who develop Oligodendroglioma?
BG: While, of course, recruiting can be a problem for clinical trials, our biggest problem is there are just a small handful of trials that are meant for oligo patients. Most often, oligos are an afterthought for research and trials. And the pipeline is quite small. One more thought: because Oligo tends to be a slow growing cancer, the lack on short term “end points” for oligo trials makes it tougher to get researchers, drug companies, and the FDA to support.
Q: Oligo Nation was founded in 2014, and has raised over $1.3M to support medical research since then. What has contributed to the foundation’s growth, and how has your support impacted research into Oligodendroglioma and other brain tumors?
BG: Our fundraising has grown every year. In 2019, our goal is to exceed $500K. This growth reflects greater involvement from the Oligo community and our ability to support their fundraising efforts.
In terms of research, we are the only organization advocating for and funding research on oligodendroglioma. We are starting to create awareness and, to some extent, interest among the research community. Our hope is that by developing all the tools to enable meaningful research, it will become “automatic” to consider how a research hypothesis could apply to our disease.
Q: Your organization takes a keen interest in biobanking and facilitating preclinical research (cell-line and PDX model development) that will lead to more clinical trials for Oligodendroglioma. Why has this been your focus, and what do you find most promising about it?
BG: Our initial focus was on translational research since I have to sons with this disease. However, without the data to develop hypotheses and the preclinical tools to test them, it is very hard to make progress. Researchers knew that working on Oligo was very difficult, so they didn’t.
I have met probably 100+ brain cancer researchers in the past 6 year and they are why I am optimistic. They are incredibly dedicated and passionate—so I believe if we provide the means and funding, they will find more effective treatments.
Q: How did you come to partner with the CBTTC – and specifically with investigators at the CBTTC Operations Center at Children’s Hospital of Philadelphia (CHOP) – and what do you find most promising about this collaboration between CBTTC and Oligo Nation?
BG: We were introduced to CHOP by someone who works with the Chordoma Foundation. CBTTC and Oligo Nation have the same goals and CBTTC has an established system for gathering tissue samples and providing data to the research community.
Q: What would you most like to share with families who’ve learned their child has an Oligodendroglioma or other brain tumor? What would your message be to clinicians, hospitals, or medical scientists?
BG: For patients and families, they need to know that their actions today can make a difference in the lives of their loved ones in the next 3-5 years. If they want new treatments to be there, we all need to get involved.
For physician/researchers: There are 15,000-20,000 people living with oligodendroglioma in the US right now. Many of these people are in the prime of their life. Your ideas and work are our hope. Contact Oligo Nation to find out about the resources we are making available and tell us how we can help you advance research.
Q: How do you think everyone can take action to raise awareness and support research to find cures for kids and adults with this disease?
BG: Everyone should get involved. Not only will it help us get to a cure faster, but taking an active role in improving the future for your loved one will make you feel better today