Does Cancer Make You Sad?


That’s not a rhetorical question. I want you to stop and think for a moment about how cancer has impacted your life. Did it attack you personally? Maybe it stole away a loved one? Perhaps you haven’t lost someone close to the disease, but it still attacked them. It made them miserable for months, and filled their life with worry and dread. Will it come back? Who will it strike next? Maybe you’ll comment below with the answer, maybe just thinking about it will just help you understand what I’m about to say.

Cancer makes me sad every day. I’ve never had it. But my son, David, did. My handsome, happy, quirky son was struck with brain cancer at only 16. He was positive, we had thousands praying, we had the best doctors, and he still died. There won’t be a day of my life that isn’t tinged with sadness because of that, but that is not my story. It is not my son’s story. People think that we work on cancer research because it makes us feel like we are keeping David’s memory alive. That’s wrong. David’s memory would live on in our minds and hearts no matter what we did. If I never forced myself out of bed in the morning, David would still be there. Just like our other children, he is still everything to us.

The reason we work so hard for cancer research is because David isn’t here to do it. Cancer took one of the best people I’ve ever met, and I know he wouldn’t have stopped trying to help people. He isn’t here, so I have to work twice as hard. That was my motivation in the beginning, but even that has changed. Like a person who has glimpsed Heaven, I’ve had a peek at what the future holds for us if we collaborate, and I’m hooked. It’s the most powerful feeling — to know that you might be able to play some small part in helping others be spared the pain that you have known.

I’ve lost track of the number of researchers we’ve talked to over the last six years. The recurring theme was that they needed better technology, more open access data, and faster access to biosamples and electronic records. We’ve found partnerships with these visionaries who want to break down the data silos and really speed cancer research. The ball is starting to roll, but there is no smooth path to follow. There are bumps and obstacles along the way. But the thing about balls is, they are more likely to keep rolling. These researchers are the same way. So are the administrators and the doctors and the patients who are all working together on this effort. It’s hard to put a number on how many are a part of this effort, but it involves top children’s hospitals all around the U.S. and is beginning to stretch beyond our borders. (Thank you, Italy!)

We want to smooth the path by giving collaborative scientists a place to work where they can share their data and make faster discoveries. The beta version of this project is called Cavatica, and it is live now. Today. It is real, and an alpha user of the platform said that it shaved a month and a half off of a process that would normally take two months. From two months to two weeks! We’ve started, but the platform needs to be so much bigger to help us find the answers we seek. So this is an appeal.

If you believe that open access data is important for clinical research…

If you believe that we need to be able to track patients through multiple trials to learn why treatments work or they fail…

If you believe that we might learn something by comparing adults and children in the same database…

If you believe we might learn something by comparing brain cancer to fibrodysplasia ossificans progressiva or other rare diseases…

If you believe that big data analytics can save valuable research time and help us narrow down causes and treatments faster…

Then please get involved today. Dragon Master Foundation has a chance to win a million dollars for cancer research in the Revlon Love Is On Challenge starting on September 14th. If you haven’t heard of us before, don’t panic. We’re only 3 years old, but we’ve already won a White House award and been invited to participate in Vice President Biden’s Cancer Moonshot Summit. Dragon Master Foundation is a 501(c)(3) with no paid staff. We are just a group of volunteers trying to give researchers what they need to find the cures we all want so desperately. Here’s how you can help:

People literally laughed at us when we told them that we wanted to build a research platform where cancer researchers could share data and work together. No one is laughing now. Cancer could have just made us sad. Instead, it motivated us to help others. We hope you will join us.

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