Sunday, December 7, 2014

How to build a slingshot

Being diagnosed with a rare cancer sucks the air right out of your lungs. But when you're a biomedical scientist, it sucks the oxygen right off your hemoglobin.

Here are a handful of reality checks that occurred to me very early on. Beyond the horror of getting dealt the cancer card in general, there is another layer of despair to work through. There is no funding for this disease. There will never be funding for this disease. No one in their right mind would even attempt to write a grant for angiosarcoma. There is no way to fight this goliath, there is no hope.

But man was I wrong. I was thinking like a scientist, and not like a patient. A patient finds hope in any situation and will charge ahead full steam until there is a defined path. I am reminded every single day that we, the patients, are a force to be reckoned with. 

Biggest lesson of all so far? How to build the slingshot. It starts with becoming organized. Because angiosarcoma is so incredibly rare, there are very few resources available to us, so we rely almost exclusively on each other through an online support group. We leverage each other's skill sets to secure support, knowledge and resources.  In our facebook  group, we have artists, musicians, pilots, engineers, nurses, scientists, medical doctors, stay at home moms, teachers, philanthropists, and scrap bookers to name a few. And we ALL throw our talents in the ring. We all get it, we all know what's at stake. 

So after four years of this n = (statistically insignificant) experiment that we found ourselves the subject of, what's come out of it? For starters, a family that offers support at every stage, from diagnosis to grief management. But beyond that, we have raised hundreds of thousands of dollars, often in the most unexpected ways for research. My favorite is a white water rafting fund raiser in Coloma California ( After the bonding and the fun on the river, we put that money directly into labs that have the ability and resources to conduct top notch research squarely focused on angiosarcoma. 

When Lauren Ryan started our community, she never worried about the numbers, or the lack of resources. She never saw this as hopeless. She just forged ahead and picked us all up along the way.  Next week I get to deliver a 25k grant in Lauren's name to a very promising researcher who is committed to thwarting this disease. And in the weeks thereafter, our group will be delivering at least two more grants to other researchers who are focusing specifically on angiosarcoma. Not in my wildest dreams, nor and in the depths of my greatest despair, could I have imagined this as a possibility. But than again, there were a lot of things I couldn't imagine without the help of my angiosarcoma family.

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