And how did we ever forget?
When your mission is finding effective treatments for an incurable disease—whether COVID or cancer—you don’t call politicians, marketing experts, or lawyers. You don’t call high tech princes, investment bankers, or twitter trolls. No, you look to scientists and researchers.
When you need a real solution to a tough problem, it doesn’t matter what people say or how many are saying it. What matters are ideas, facts and proof. The plain fact is that meaningful advancements in human history are more often driven by scientific discovery than charismatic leaders or powerful armies.
While COVID remains a terrible thing in a multitude of ways, it has reminded the nation that science is a critical and powerful element in solving big problems. In many cases, like COVID, science is the only real solution. The medical research industry has marshalled tremendous resources and thousands of brilliant, highly trained minds to the task of finding a cure or a vaccine. The fact that there are already 10 vaccines in human trials is an amazing show of strength and exactly what our country and the world need. Will they all work? No, but we only need one.
At Oligo Nation, we knew from day one that our hopes for better treatments and a cure rested with getting the scientific community engaged in oligodendroglioma research. The past seven years have been dedicated to doing this. While I remain unsatisfied by what we have accomplished so far, my interactions with the scientists reinforces my belief that we can reach our goal of better treatments and, ultimately, a cure.
The leading researchers and clinicians that I have met and worked with are truly an incredible group. Terms like brilliant and passionate are thrown around quite a bit but, in this case, they are totally deserved. One of the surprising facts about neuro-oncology researchers is that many, if not most, are clinicians that also run research labs. This means that the same people doing the research are also having the hard conversations with patients, so they know—and feel—what is at stake.
But even with this stellar group of researchers working in oncology and brain cancer, there are serious challenges to making science happen for our disease. Oligo Nation is working to address these:
Awareness and interest—When we first started there was literally no research being done on our disease. Being diagnosed with an Oligo was considered a “good” outcome versus other brain tumors like GBM. No one was focused on Oligo and no one was pushing for research into potential treatments. Oligo Nation has played an important role in raising awareness and interest in oligodendroglioma research. Making sure that Oligo is on the agenda can yield inclusion in research initiatives and open doors to projects under consideration.
Research Resources—The path to a clinical trial involves two big areas. The first is discovery—review the data about a cancer and developing a hypothesis based on what the data reveal and how other cancers with some similarities have behaved. That is why we launched the oligodendroglioma biobank and will be providing DNA and RNA sequencing data to the research community in the months ahead. We are also working with NCI and the Broad Institute to provide proteomic and CRISPR data.
The second step is preclinical research—testing the hypothesis/drugs in disease models, usually first in cell lines and then in mouse models. The lack of these models has been a big obstacle that has prevented research that could have or should have included Oligo. We have launched a cell line repository to supply cell lines to researchers around the world. We are also working with NCI to provide mouse models to researchers.
Funding—Every research lab needs funding to do projects. When we started, there was no money and, as a result, no research. Brain cancer is poorly funded, and probably 90% of the money goes to GBM. Oligo research funding is less than $5M annually (my estimate). We plan to make $1M in research commitments this year, but how far and how fast we make progress is dependent on growing this number. Growing that number is dependent on support from the Oligo community.
This year, we have established a scientific advisory board to provide insight and direction as we make investments. We are fortunate that some of the leaders in the field (both academic research and bio-pharma) will be participating. The first step will be building a 3-year plan for research investment that will lead to clinical trials for Oligo patients.
For those of us in the Oligo community, science is the only possible path to a cure. Oligo Nation has a singular focus on advocating for and funding research. With your support, we will continue to grow our efforts.