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!

52 People You Need To Meet: #9 Liz Salmi, aka The Liz Army

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What I wish I knew before my brain was diagnosed with cancer:
It can happen to anyone.

Liz Salmi

I was diagnosed with a low-grade, but malignant, brain cancer just one week after my 29th birthday. The diagnosis was like, “Happy birthday! Thirty is just around the corner, and in case you didn’t feel like an adult yet, you now have cancer!”

I used to think cancer was a disease for kids. Or older people. Or for smokers. Or overweight folks who made poor food choices. Or better yet: old, overweight smokers who ate fast food and drank 2-liters of soda on a daily basis.

So when I was diagnosed I was afraid it was my fault.

I was a healthy 29-year old. I exercised and consumed a diet rich in fruits and “good fats.” I didn’t drink alcohol and never did drugs. I was a nice person.

What did I do wrong? I asked myself.

The most frustrating part of cancer is that it doesn’t discriminate. Cancer doesn’t care for whom you voted, or to which god you choose to pray. Some of the most controversial matters humankind wastes our time fighting about are rendered meaningless in the face of a disease like cancer.

What I wish I knew before I was diagnosed is: it can happen to anyone.

When I came to that realization I was able to get rid of the weird guilty feelings that I was somehow at fault. And with guilt out of the way I was able to focus on being awesome (i.e., dealing with adversity) and putting myself in a mental space to get better.

So in the first few weeks or months after diagnosis you find yourself wondering why? or what you didn’t wrong, please know it is not your fault.

It is up to you to choose how you want to handle your cancer. My advice is to be awesome.

Editor’s note:

Liz is an awesome survivor and advocate. You can read more about her on her blog: http://thelizarmy.com/how-to/