What is Your Field of Dreams?

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Field of DreamsIt occurred to me today that I don’t really get to talk to our supporters enough. Working on Dragon Master Foundation has turned into a full-time volunteer job for me, and most of the time, my head is down on one project or another. The work doesn’t stop coming, but I am so thankful to be in this position – doing this on behalf of cancer warriors. I wanted to stop for just a moment today, and let you know what your support has made possible this week. (And yes, it is only Tuesday!)

You helped give encouragement to a researcher who has developed a program around brain tumor tissue donation. We will be sharing a lot of his work over the next few months, but sometimes, they just need to hear that their work matters. As he told me about the extremely sacrificial gift he works with in his lab, I could hear the emotion in his voice. Tears gathered in my own eyes as I thought about the sacrifice our family has made, and I hope you all know that giving families this final way to make a difference is a truly valuable gift.

You helped gather feedback on the recently launched research platform, Cavatica, from a man who has dedicated most of his nearly 70 years on this planet to cancer research. He spoke with wonder in his voice of the things he is able to accomplish with this technology – things he never thought possible!

You helped give hope to a group of innovators who are developing a big data algorithm that can make treatment recommendations based on a patient’s DNA. They had been struggling to find the amount of data needed to test their theories, and now they have a source for their work.

These were conversations filled with hope, and that is what we are funding. When we started Dragon Master Foundation, it was because we had some audacious ideas about how to help researchers. Less than four years in, we have accomplished so many of the goals we set out to achieve. There is a real-time, open access platform where hospitals can share genomic and patient data. As I type, there are more than 15 hospitals sharing that data with agreed upon data standards. That alone is more than most people thought would be possible. Like the movie Field of Dreams, this is a real life “if you build it they will come” situation.

Which leads me to the best kind of problem to have. We can’t seem to fund the progress fast enough. We have delivered a tool to the nation’s top doctors who are eager to use it, but we need to fund the data to go inside. Putting the data into Cavatica means truly empowering precision medicine. It means we will be on our way to saving lives. If you’ve ever faced cancer, for yourself or a loved one, then you know that today matters.

There’s another great quote in Field of Dreams that applies to this situation. Archie Graham says, “We just don’t recognize life’s most significant moments while they’re happening. Back then I thought, “Well, there’ll be other days”. I didn’t realize that that was the only day.” It’s easy to let days slip by without taking action, but one day, there won’t be any more chances. We have to seize the opportunity now! Not because there won’t still be data to add tomorrow, but because there are lives being lost today. Every day is life or death to someone. So let’s work with urgency now to save more lives tomorrow.

 

It’s Kind of a Big Deal

Dragon Master Foundation
Wish I knew who to credit for this pic because it is awesome.

Wish I knew who to credit for this pic because it is awesome.

We get a lot of questions about Dragon Master Foundation, and whenever I have the chance to talk to someone about it, the response is amazing. They always end up saying “Wow, that’s such a big deal!” People are so generous with their support once they understand the project. The problem is, a lot of people don’t understand what we are doing and why it is needed. So I thought I’d take a moment to explain a little bit about what makes this project so special.

When David was sick, we were inside hospitals for days at a time watching people do their jobs. Technology is everywhere – from the patient bedside to databases in some unseen corner of the building. However, all of that technology seems to be locked inside each institution, with very little ability to share information from one hospital to the next.

It is like  being a horse with blinders on. You can only see a small part what’s really out there. You get a myopic view of the world. Unfortunately, that is the world most cancer doctors and researchers face. They long for more information, but it is largely out of their reach.

You may be thinking, “But what about the internet? Can’t they just send their information back and forth?” The short answer is no. Between HIPAA, different technology formats, and the sheer size of data, even the most collaborative hospitals have trouble sharing all the information researchers want to access. Collaboration would mean that a database would quickly need to warehouse petabytes of of information – a task that has only been tackled by the likes of the NSA or Google in the past.

It is an overwhelming task, to be sure, but for the first time in history, it is possible. It is possible to house genetic information and clinical data in one place so that researchers can really see the “big picture” of a patient’s health and furthermore, they can compare that patient to other patients. They can start to see why a drug works for one patient and not another. They can start to make sense out of things that are seemingly random.

It will be four years this September since we were dropped into this cancer world. I’m not a doctor or a researcher, but I’ve talked to as many as I could over that time, and every one of them has said a database like this would be an asset to them. EVERY ONE OF THEM.

And yet, we continue to spend money on tiny projects that help a single researcher or a single hospital. Please don’t misunderstand. Every researcher needs funding. Every hospital needs more help. But this is a situation of not being able to see the forrest for the trees. We need to build an infrastructure for the research data if we ever hope to move at a pace that is faster than cancer.

The good news is, we have made amazing progress. We have joined forces with the Children’s Brain Tumor Tissue Consortium, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Chicago’s Lurie Children’s Hospital, and Children’s Hospital of Seattle to take the database they are working on and grow it to a scale that can help pediatric and adult patients. The data is already being collected, which is a great and wonderful thing. However, it means that we are already at a place where we need vast amounts of funding in order to continue to grow.

I wake up every morning more sure that this database will change the way they do medical research. I have hope that people will begin to understand the vision that that this database represents, and that they will focus on helping us build it. You ABSOLUTELY CAN make a HUGE difference in the fight against cancer. Please share the mission of Dragon Master Foundation. Like us on Facebook ( http://www.facebook.com/DragonMasterFoundation ). Follow us on Twitter (@dragonmasterfdn and/or @amandahaddock ). Host a grass-roots fundraising event. Something as simple as dining out at a local restaurant that will donate proceeds can be a huge help with both raising money and raising awareness. Cancer is a beast that is taking lives. You can be a dragon master. Please join us today!

Shocking Donation From A Teen Should Have Everyone’s Attention

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This young man did something shocking on January 15, 2010. This story caught my eye because it was about a kid with brain cancer. A kid who liked soccer and cooking. A kid who died on my son’s birthday in 2010 – the year my son would be diagnosed with the exact same kind of tumor. But none of those are the reason that I’m sharing this with you.

Here’s his story if you want to read the whole article: http://m.michiganradio.org/?utm_referrer=https%3A%2F%2Fm.facebook.com#mobile/10466

The shocking thing about Laurance Carolin is that he was the FIRST “child” to donate his brain to this hospital for research. That is significant to me, and it should be to you, too. Here’s why:

1. The C.S. Mott Children’s Hospital at the University of Michigan has been around since 1905. So in more than a hundred years, no one had made the decision to let researchers study their child’s brain after death. Laurence and his parents made the heart-wrenching decision to donate his tissue to help others. It isn’t like organ donation. They knew it wasn’t going to directly save a person’s life. They had the VISION to understand that it could save thousands of lives down the road.

2. Tissue donation is rare. I’m working on this issue every day, and even I didn’t realize it was this rare. It is dependent on people being generous in one of the scariest times in their lives. I don’t know about you, but when I’m scared, I’m usually only thinking about myself and my family. Having the presence of mind to think beyond your current situation takes courage.

3. Brain tumor biopsies only yield very small samples. Because of the location, surgeons have to be particularly careful with tissue removal, and the result is frequently tiny pieces of tissue that are not useful for research. Having access to the brain post-mortem means that they can take larger pieces of tissue for study.

4. This hospital took the tissue to use for research. That might not sound significant to you, but it is. They could have said, “Sorry, we don’t have a program to do that.” I’ve heard of other hospitals saying, “Sorry we don’t have room to store it.” The C.S. Mott Children’s Hospital at the University of Michigan found a way to make Laurence’s donation matter, and it may not have been easy for them.

5. You have the power to make donations like Laurence’s more significant. The whole point to Dragon Master Foundation is to build an infrastructure that multiple hospitals can use to collect, store and analyze this type of tissue. There are still places where the tissue not needed for diagnosis is simply discarded. And yet, at the same time, there are researchers who don’t have the tissue they need to do research.

It is a significant problem that we are just now able to solve. Technology is just getting to a place where it is somewhat affordable to build the type of infrastructure that researchers need. This database will help researchers at multiple institutions. They will have far greater access to the data they need to find better treatments, and ultimately cures.

I believe with all of my heart that this database will help researchers cure cancer. I can’t do the research, but I can help raise the money for them to have this resource. If you want to help, too, please get in touch with me. Everyone can play a part!