I am fascinated by precision medicine, both personally and professionally. As Americans, we want the best in healthcare, and we have many examples of great healthcare happening around us. Traditionally, though, the focus has been on the providers of care, such as doctors, nurses, and hospitals. With precision medicine, there is great potential to shift the focus of care to each individual, rather than through a lens of the “average” patient.
You always hear people talk about “aha” moments, but it’s still kind of shocking when you have one. I remember the exact moment that changed the course of my life. You might think it was getting married or the birth of my children. If you know much about my story, you might think it had something to do with my son’s cancer diagnosis, and it did – but not how you might think.
You see, my son David was diagnosed with brain cancer in 2010. It was a devastating blow to our family. David had the exact same type of cancer that Ted Kennedy died from in 2009. An aggressive cancer, there are few effective treatments and most patients only survive for less than two years. We knew that curing David was out of reach at that moment, but we were optimistic that we could keep him alive until a cure was found. It was impossible to look into his blue eyes, see his giant smile, and think that he wasn’t going to make it.
I wish this was one of those stories where a miracle cure was found at the last possible moment. I wish that I could tell you that David would be a senior in college this fall along with his friends. But that’s not how this story goes. After only 20 months, David passed away. He was as ready as an 18 year old could be and was always more concerned with those he would leave behind – especially other kids with cancer. We had started volunteering with brain cancer groups almost as soon as David was diagnosed, and in his honor, we continued volunteering.
My “aha” moment came at one of those events. A cancer researcher said in her speech that she thought a cure for cancer could be found if they could compare 50,000 genomes. That sentence stuck with my husband, Richard, and I. We couldn’t figure out why someone wasn’t comparing those genomes. As soon as she finished speaking, we asked to talk with her. She explained to us that although there are many genome databases, none of them had reached a scale large enough to do the types of comparisons she thought was necessary.
She started us down a path of research. We searched for the biggest genomic databases we could find and talked to as many researchers as we could. The recurring theme always seemed to be that none of the databases included everything that the researchers wanted. There were major technological hurdles of sharing and collaborating on large scale amounts of genomic data. Nothing we could find was built to scale to the vision of collaborative research that we had formed.
So in 2013, we started working on a new nonprofit – not because we felt the need to have a foundation of our own, but more because we couldn’t find anyone who believed that the collaborative database we envisioned was even possible. We wanted to build a new kind of real time, open-access infrastructure incorporating genomic and clinical data accessible to any bright mind who wanted to work on cancer research.
We were fortunate to connect with a group of amazing pediatric cancer researchers. They had formed a consortium of research hospitals dedicated to new ways of doing cancer research that empowers collaboration and discovery. Partnering with them, we’re creating an innovative, open access data repository that allows for new types of collaborative analyses to be performed on the internet. Our efforts have the capacity to transform not only cancer research, but also any number of other biomedical research fields.
Amanda Haddock is President of Dragon Master Foundation, a nonprofit focused on giving cancer researchers the tools and technology they need to find better treatments and cures.