As sweet and wonderful as my husband, daughter, bonus daughter, and bonus son are, they can’t give me what I really want for Mother’s Day. If you know me, you’re thinking I’d want David back. Well, sort of. I mean, with all of my heart, I’d love to have him right here beside me, but how can I wish him back from a world so much better than this one? Now that he is there, I know he must stay. So what I’d really wish for is that no other parent would have to prematurely say goodbye their child. I want a cure.
You can look at my son’s death in a few different ways. In the most detailed way, you could say, “he died from GBM so we want to cure that.” Or you could broaden that scope and say “he died from brain cancer so we want to cure that.” He was a teen when he got cancer and that would fall into “childhood cancer” territory, so you could say we should cure that. Or you could look at the big picture and say “he died from cancer, so we want to cure that.”
There have been successful foundations set up with each of those goals. I guess the difference we bring to the equation is that we see the synergy between all those goals. We need to see the minutia in order to see the big picture. But by focusing on just GBM or just childhood cancer, we may miss answers that lie just beyond in brain cancer or cancer in general.
Please understand that I am not faulting the foundations that came before us. They all have served a very important purpose. I believe that we fill a gap between all the other foundations. We want to bring them all together. We want to take data from the individual silos, from the small consortiums, and put it into one massive database. People think that researchers and institutions won’t share. We know that isn’t true. There are consortiums all around the world, and we have already signed on five hospitals to share their data with us.
The missing piece is the data – not the sharing. We need to create high-quality data that is meta tagged for a searchable, graphing database that can be used in real time by researchers in virtually any location. We want to give them access to the data AND the computational power they will need to work with it. In the same way that Facebook can suggest new friends, or Amazon can suggest the next book you should read, computers can help researchers find new leads in the war on cancer.
Instead of wondering why some patients are successful in a clinical trial and some are not, the computer would be able to analyze each patient down to the molecular level to see what the successful patients have in common. They’ll know what the patients have in common who aren’t successful on the trial. These answers mostly elude researchers right now because of the complexity of detail. This type of database will speed research by an incomprehensible amount.
In a span of moments, they could query the database for information that takes months or years to deduce with current systems. Think about it as trying to find information for a report in 1980. You would have to go to the library, dig around for books and periodicals, maybe even travel to a different library to get all the information you need. The internet has put the most mundane information at the touch of our fingers. We just want to do the same for critical cancer research data.
If you want to do something for me and for all the mothers who are mourning their child because of cancer, then please plan to attend this webinar: http://bit.ly/1dLwolc . You will hear people far more eloquent than me discuss this database and what it will mean for cancer research. It will give you hope, and I pray it will give you purpose because we need more people in this fight.