The Tip of the Iceberg

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Today is the last day of Brain Cancer/ Brain Tumor Awareness Month, and I’ve got to admit, I’m ready to get some color back in my wardrobe. Grey has never been my favorite color, and now I wear it all the time!

As we end this month, I feel like I should report in a little bit. It’s been so busy! And it has been more successful than past years! I even saw an airline employee wearing a grey tie this year! Granted it was only one guy, not the whole crew, but progress is progress!

I traveled from Kansas to DC, Iowa, Texas, and Pennsylvania this month – mostly for volunteer purposes (Texas was also a work trip). I learned some good and some bad stuff about the world if cancer research, but I’m more optimistic than ever. That optimism is due in large part to the Childhood Brain Tumor Tissue Consortium.

In the competitive world of cancer research, they have found a way to work with their competitors. They are eager to help others access the information they have gathered, and have a vision of their database moving well beyond the world of childhood brain cancer research. This is a mission so closely aligned with that of Dragon Master Foundation that we could hardly believe it was real.

One of the project leaders told us that they “leave their egos at the door.” What he didn’t say is that they also leave behind some money making opportunities. Doctors are volunteering their time to build this resource. Others are working far more hours than they are compensated for, but they are all happy to do it. Why? Because they understand that this type of collaboration is going to change the world of cancer research. In fact, I’d say it is going to change medical research. Period.

But before it can, there is a lot of education that needs to happen. We need everyone to act purposefully toward bringing about a new research system. What exists is a hodgepodge of databases built over time that are inadequate for global scalability. What is needed is a massive database (think Google or Amazon or NSA) that can be utilized by cancer researchers everywhere.

It may sound crazy, but this database is going to depend on you. You are the consumer in this equation. What are you “buying?” Are you asking questions of your hospitals and nonprofits? Do you know if they are sharing their data?

Even if you ask, you may not get a straight answer. Many nonprofits ask that researchers report their findings, but there is not a lot of oversight to ensure that reporting happens. And if it happens, it may take years. We demand instant access to all sorts of superfluous data. Shouldn’t we demand instant access to data that could save lives?

If these types of questions sound important to you, then please support Dragon Master Foundation. We need people who care to pay attention and help spread this message. Change is not going to come from the government or the pharmaceutical companies. Change is going to come from you. And me. And all of the people who are tired of watching their loved ones die.

One person absolutely can make a difference. Are you going to be that one?

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