| Share |  |
Chordoma sucks. Visit the J.P. Morgan Chase Community / Facebook Giving Challenge on Facebook and vote for the Chordoma Foundation so that $1,000,000 will go to Chordoma research.
Also, please share this page on facebook and twitter. Click the links above.
My name is John Nelson. I am a 25 year old geek who had — and probably still has — a rare disease called Chordoma.
This is me and my family. I'm the guy in the bottom left.
Chordoma is a very rare and devastating type of cancer. Chordoma tumors are treated by surgical excision and enormous doses of radiation. Chemotherapies have not proven very effective. There is no cure. The tumor recurs very often. When the surgical and radiological treatments have been exhausted, Chordoma usually proves fatal.
Please vote for the Chordoma Foundation in the J.P. Morgan Chase Facebook Community Giving Challenge.
Also, if you can spare a few dollars, please donate to the Chordoma Foundation. I realize a lot of people don't have money to spare right now — myself included — but every little bit helps.
Click the link that accurately describes you.
You Like Me | Like Charts and Graphs | Root for the Underdogs
Let's face it: I am pretty neat. Whether you are my friend, a member of my family, or a general lover of geekdom, you probably would like it if I did not die at a young age.
To prevent premature death, I need a cure for Chordoma. The cure requires research; Research costs money. It's that simple.
This argument can be invoked by anyone with Chordoma. People with Chordoma represent a statistically anomalous set in more ways than one: they have a very rare type of cancer and they are all stellar people.
I would be crazy to suggest that research funding for Chordoma should be comparable, in absolute terms, to research funding for equally devastating but far more common diseases. (Well, I might be crazy, but I am not making this suggestion.) However, it doesn't seem silly to make a simpler assertion: applying the lessons learned and new technologies generated from trying to cure other diseases to Chordoma probably has a very nice risk-to-rewards ratio.
In simple XKCD terms:
I.E, The first derivative of benefits over marginal expenditure is higher for Chordoma than
most other diseases.
(Thanks to Kevin for redrawing this chart. Checkout his art.)
The more astute reader might immediately challenge this graph. While it is true that the expected gains in relative terms might be greater for lesser researched diseases than for more common diseases, if you are measuring absolute gains in lives potentially saved, the case for more Chordoma research funding is weaker. That could be true. I have my doubts, but I am pretty biased. The reasonable test would be comparing research dollars spent per patient of a common disease with research spent per Chordoma patient, while taking the differences in expected marginal productivity into account.
I have not done this. However, I offer the following counter-factual historical narrative. Imagine streptococcal bacteria did not exist until last year, yet the discovery of penicillin followed the factual time-line. When streptococcal bacteria suddenly emerged, it would not take a tremendous amount of brain power to realize that penicillin is a good call. Chordoma is almost in this state. A lot of the money needs to go towards paying for comparably simpler things like tissue banks and match-normal tissue sequencing.
Have you still not voted? Please do!
Chordoma is damn rare. The incidence rate is about one per million. You have a better chance of knowing two people who were struck by lightning than knowing one person with a Chordoma.
This feels vaguely like Wacky Waving Inflatable Arm Flaling Tube Man but vote now!
I can only offer my sincerest thanks. Thanks.