Sunday, November 30, 2014

Raising the gauntlet

Sometimes the answers to the most challenging problems are right in front of us..and in some cases, inside of us. When trying to string together enough resources to bring down a rare and understudied cancer, like angiosarcoma for example (ehemm), you can gather money, you can galvanize the researchers, you can light a fire under the patients who are desperate for a cure, but in the end, if there's no material to study, there can't be progress.
Fact number 1 in the fight against any monster, you need to be able to see it to win. So what are we supposed to do about the fact that there's too few of us to get the tissue in order to have studies that are meaningful? For the past two years, I have been exploring the idea of opening up a tissue bank for angiosarcoma. But there are many MANY hurdles to overcome before committing to such an important endeavor.

We will get there and this is why.

We are a highly motivated group of people who are already making a huge difference in the world of biomedical research. We have funded research that has led to the publication of three peer reviewed papers focused on angiosarcoma. Unbelievable for such a rare cancer! We know that we need to do this ourselves, and we are willing to pick up the gauntlet despite the physical and emotional toll that cancer takes on us. We are a mission driven family who will go to the ends of the earth for each other.  And guess what, doctors and researchers have noticed. They are paying attention to us, to the fact that we are becoming organized, and that even in this tiniest of populations, there is strength in numbers.

We will get there and this is how.

We happened to get biopsied or resected in all corners of the world. So in Idaho, there's a tumor embedded in paraffin that might hold an important clue that would help us understand how this cancer works. In Northern California, a different tumor in a long forgotten about pathology department might fit a different piece of the puzzle.  Taken together, all of our tumors will reveal the genetic underpinnings of what drives this disease. It will take a little more time to figure out the right path (no pun of course) forward, but we know this must happen. And like we've already done so many times before, we will come together and figure this out as a team. Step number one is figuring out who will participate in a drive to get our tumors organized. Step number two is figuring out where to send them. Step number three is figuring out the easiest way to make this happen so that the burden of doing this is not too much to handle. Step number four is figuring out what we as a community should expect back from this research. Step number 5 is figuring out how we as a community of people fighting for our lives will help each other understand the value of getting our tumors centralized. Bottom line, it's the most significant hurdle we must overcome if we are going to take the next steps toward understanding this beast.

The most powerful weapon we have in our arsenal is our tumors. We can continue to raise money and fund research, but unless we know what questions to ask, we are researching in the dark. Time to turn on the lights and face this cancer with our eyes opened. Time to see exactly what mutations are driving this disease. Time to figure out what chemo's and targeted therapies will work for each one of us. Time for some meaningful change. Time...

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