This morning I woke with a start and was completely wide awake. I am not a morning person, so this was very unusual for me. I had been awakened by my dream. In my dream, I was able to think a little more freely about some questions as they relate to cancer research, and I woke up super excited to put those questions down on paper.
The timing is perfect as four board members from Dragon Master Foundation are traveling to Philadelphia this week to meet with the Childhood Brain Tumor Tissue Consortium. This is the second meeting for Richard and I, but the first time we are able to take other board members. It is significant because the progress we can make in person is more collaborative than what we can discover over the phone. Rapport has been built, and I believe both teams are eager to forge a bond that will help us move this big data project forward.
I can’t really share every thing that is going through my mind, but there is a central issue that I think is key for all of us to understand. It starts with Ted Kennedy.
Ted Kennedy was diagnosed with GBM in 2008. He went to the best doctors money could buy, and he died anyway. There is much to be learned about brain cancer. My son, David, was diagnosed in 2010, and he died in 2012. He also had amazing doctors, and unlike Mr. Kennedy, David had great health and youth on his side. It didn’t help. The doctors and researchers didn’t have any new information to work with that might make a difference. There has been little progress in brain cancer research in the last few decades. However, in the last couple of years, scientists have discovered that GBM is not just one disease. There are at least four subtypes. It is easy to understand that these subtypes might all react differently to different treatments. Right?
And now for the really important part. If there are four subtypes of GBM that have just recently been discovered, what other things might we have been missing in the “big picture”? You see, we are in a revolutionary time in both science and technology. And one can barely keep up with the other. Researchers are pushing to the edge of their worlds – eager to go farther, faster. Data engineers are using bigger sets of data in new and innovative ways – eager to go farther, faster. But there are precious few resources being given to bring these two sets of people together. Imagine a researcher writing out all the questions he or she is trying to answer. There may be hundreds of possible scenarios they want to investigate. It would take a whole lab full of people months, or maybe even years, to answer all the questions. They might not ever be able to answer the questions because they simply don’t have access to enough data.
That is where the data engineers come in. They can take the data and program the computer to find similarities and differences, greatly reducing the number of man hours needed to get answers. The questions are hard, but the answers could be easy.
However, before any of that can happen, we have to build the database. The exciting thing for us is that the team at CBTTC has already begun doing that. They have started “small”, with childhood brain tumor patients, but their vision is big. We believe it is going to be able to scale quickly to include adult tumors and then even beyond brain cancer. This is the way research will be done in the future, and we are poised to make it happen now. NOW. And the faster this database is built, the faster they can save lives.
To say we are working with a sense of urgency is an understatement. It woke me up this morning. I think about it every day. I truly believe the only thing standing between us and a cure for cancer is this lack of a database. So we are going to build it, but we truly, desperately need your help.
Everyone can do something, and right now the thing we are going to need most is resources to build the database. We need citizens like you to care about a cure for cancer right now. You need to ask your hospitals if they are sharing data. Don’t accept no for an answer. We need to build this database big enough that they can all share -which is going to take a lot of money. The good news is that the major expense is in building the database. Once the resource is built, ongoing expenses will be a fraction of the start-up costs. So the help we need in the beginning will diminish over time. When the database is fully functional, it will save money elsewhere that could be re-allocated to fund the database.
Please share this story with everyone you know. It is so important that we get this database built. It is too late for my son, but there are so many other lives at stake. We can’t afford to wait for someone else to fix this problem. We have to do it ourselves. Now.
If you’d like to donate to the project, you can make a tax-deductible donation here:
If you would like to plan a fundraiser in your area, please let me know and we can help you get started. We CAN do this!