Five Reasons Why You Should Join the Fight Against Cancer

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20140629-230537-83137451.jpgWhen we first announced the name of our foundation, people thought we were a little crazy. I understand that the name is unconventional, but so is our goal. It is different. Some might say impossible. So our name reflects not only the enormity of the task, but also that we plan to be successful.

Scientists have been fighting cancer for decades. We have made some advances to be sure, but we are a long way from declaring victory. There are many warriors in this battle, but no united force bringing them together. We live in the Information Age, but research information is in silos that are hard to access. We need the power of the data in every researcher’s hand.

I believe that most people believe, like I did, that there are vast resources available to cancer researchers. That is not the case. There are excellent pockets of data out there, but they are kept at institutions that have limited abilities to share the data with others.

From the National Institute of Health to St. Jude to your local hospital, information is being gathered. It may or may not, ever make it beyond the walls of that particular institution, though. We need a revolution in our healthcare system. That is why we formed Dragon Master Foundation, and that is why we need you to get involved.

Reason #1-
However small we are, we should always fight for what we believe to be right. And I don’t mean fight with the power of our fists or the power of our swords…I mean the power of our brains and our thoughts and our dreams.” – Cressida Cowell
We have to imagine a world where the cure for cancer is found. What will that world look like? We believe that this is an exciting time where data can be truly harnessed by a new generation of computers. Where a researcher’s theory can be tested, enhanced, and modified within the confines of a database, sparing thousands of manhours of research.

#2. “The Alpha protects them all.” – from How To Train Your Dragon 2
I take this quote two different ways. The first is that the largest cancer research organizations should lead the way for us all. I believe they are trying, but they haven’t found a way to bring it all together. The movie this quote is taken from shows a new “alpha” coming to power. The new Alpha isn’t bigger, but it brings together the power of the group. Above all else, it wanted to protect those it loved. Anyone who has watched a loved one fight cancer can understand this need to protect. Some of us have been powerless in the fight. There was no alpha to bring the group together. Dragon Master Foundation wants to change that.

#3. “I’ve coulda gave up then, but then again I couldn’t have ’cause, I’ve traveled all this way for something.” – from the song “On Top of the World” by Imagine Dragons
Cancer has taken it’s toll on my family’s life. It is a horrible and devastating reality, and it will strike one in three Americans. How many people are there in your family? Those aren’t great odds, are they? I was ignorant about cancer before my son was diagnosed. We travelled through Hell, and it would be the easiest thing in the world to run and not look back. But I’ve travelled down this road for some reason, and I believe the reason is to rally the troops. You may choose to wait until this battle comes to your door, but I’m praying you won’t.

#4. “To have a child is the greatest honor and responsibility that can be bestowed upon any living being.” – Christopher Paolini in Eragon
It’s a popular saying that “it takes a village to raise a child”, and if that is the case, then we are all parents – whether or not you have a biological child. We are all stewards of the Earth and those who walk upon it. There are many worthy causes to fight for, but among them, cancer is one of the most deadly to the most innocent among us. There are few things to compare with cutting a life short. We ruthlessly pursue murderers and terrorists, but we are not pursuing cancer with the same vigor. Cancer killed my child. I’m fighting so that we can stop it from killing yours, too.

#5. “He doesn’t understand that he’s the one that has the power to stop it. He simply can’t imagine that one little boy could be that important.” – from the Neverending Story
It is hard to imagine how you make a difference in the fight against cancer, but you do!! With every person that stands up in the fight, a researcher is more energized in their work. With each person who commits their meager donation to the cause, we inch toward our goal. With every share of a blog post or Tweet or status, you tell the story for people who can no longer advocate for themselves.

The fact is that you do make a difference. Your voice, your time, and your resources matter a lot in the fight against cancer. We appreciate each and every one of you who have joined in this fight with us. And if you would like to learn more, read about our goals at http://www.dragonmasterfoundation.org

 

It’s A Revolution, I Suppose

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This past weekend I had the opportunity to meet some women I had previously only known through Facebook. We traveled two and a half hours to meet with about 30 ladies who have all been caregivers to a loved one with brain cancer. It was cathartic, energizing, sad and joyous. They are amazing people.

As I was talking to them, I realized that though we talk a lot on Facebook, they didn’t really know what the Dragon Master Foundation is or what we hope to accomplish. They asked, and I told them my vision for the foundation. They all seemed excited and supportive. They told me their stories – some of which made me downright angry.

I can’t share the stories they shared with me. Those are for them to tell, but I can tell you what I told them.

We started Dragon Master Foundation because of one main incident. We heard Dr. Anna Barker speak last October, and she brought up and quickly dismissed her dream to have thousands of genomes in a database where she could compare the data. It’s a ridiculously large dream for “mere mortals”, but that type of technology is already in use by big business and governments. It’s how the NSA tracks all the phone calls and emails they collect. It’s how Google knows what you bought online and how it suggests other products. It exists. It is not being made accessible to these researchers. Why? Well, it is expensive, for starters. A database the size and scope of what they need will cost millions of dollars. And that is just to build the empty database! Collecting the data that they need to go into the database could potentially cost even more… unless…

What if we could find a way for the existing institutions to work together? What if we could compile all the data they have, make it easier for them to access and study, and then also give them access to thousands of other records? So researchers would go from looking at 50-100 records to looking at several thousand. Patterns would be easier to spot.

The technology exists to do that, but the project is so large that no one has had the funding to use it. That’s where we come in. Dragon Master Foundation is going to build a database that will be accessible to member institutions to use. It will have genome data, but it will also be able to house clinical data, and environmental data.

Precious little is known about what might cause brain cancer. The few available drugs work for some people, some of the time. We need more information available to the researches so they can begin to understand why that is the case. Patients and caregivers frequently credit diet, exercise, and other environmental data as the key to longer survival, but that data isn’t being widely studied. There are so many other factors to keep track of, there simply isn’t room to store that kind of stuff, too.

We want to change all that. We want to build the researcher’s dream database. They need the proper tools to fight this beast. And guess what? Once we compile this kind of data, there is no telling what other implications it may have! This is an investment in our future – our children’s future – and we need your help.

If you know someone who wants to build a better world for research (doctors, scientists, programmers, etc), please tell them about our project. We welcome collaboration, and we plan to be the most valuable resource these doctors and researchers have.

And if you are wondering about the title of this post, go listen to “Radioactive” by Imagine Dragons. I could write a whole other post on this song and the inspiration I get from this band. Maybe I’ll do that!