There has been a email floating around the last two months about an interesting "contest". The word "contest" doesn't really fit either because the "winners" are currently losing. Let me explain.
There is a movie out called "Extraordinary Measures" about a man with two sick children. He gives up everything he knows in order to help find a cure or even to find someone to help him look for a cure.
This theme strikes close to home because the disease they are fighting is a Muscular Dystrophy, which is related to what I have. Specifically, I have Spinal Muscular Atrophy. So I understand living with something that has no known cure and could drastically shorten my life.
Back to the contest. Inspired by the movie the contest asks for people to submit their story of a need for research funding of a cure or treatment. The public is asked to vote for which story deserves $10,000 to go towards research.
As of this writing there are 264 stories hoping they might be the one chosen to receive the funding. I don't have the heart to watch each gut wrenching story. I would be an emotional mess. The story I have been asked to vote for is called "Noah's Hope".
Go to this website, http://extraordinarymeasuresthemovie.com/#/quilt.
Search for "Noah's Hope" and you will see his video.
It will crush you.
The odd part of this whole "contest" is that it has to exist. Why does any disease need to be commercially viable to warrant funding?
"Oh good you have cancer, we can sell that research."
Why can't medical research just be done?
Why can't the researchers just be paid? Kinda like NASA works. The government pays them to just do spacey stuff. I like NASA, don't get me wrong, but in the whole vast configuration of the world what is more important? Going to the moon or curing diseases?
I did some checking and NASA has a budget of $17 billion do to basically whatever they want. Last September President Obama awarded $5 billion towards medical research to cure diseases. I'm slightly put off by those numbers. If I'm wrong please let me know.
There are billions spent each year to care for those effected by diseases. I would like to see more spent on trying to prevent the need to be cared for.
I don't remember being asked to donate for research for erectile dysfunction, birth control or smoking cessation.
Families shouldn't have to beg for research so their children can live normal lives.