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> he’s begun to create a road map for other families facing rare diseases — as much as 10 percent of the population, or 30 million Americans. 10% of our famili

> he’s begun to create a road map for other families facing rare diseases — as much as 10 percent of the population, or 30 million Americans. 10% of our families are effected by "rare" diseases. September is Pediatric Cancer Awareness Month: 100% of Pediatric Cancer is classified as "rare." It is used to give so little in research and most money is used to help the families financially. 4% of the US Cancer Grant is allocated to Pediatric Cancer research. Lost a sister at 15 to brain cancer and a son at 12 to bone cancer. The worst thing to do is to call it rare. How many thousands didn't start school this year? How many thousands of families have lost

ams6110 8y ago
Well it is rare, though. More kids are killed by automobiles than die of pediatric cancer. That doesn't make it any easier for those families dealing with pediatric cancer. But it is rare, and if your goal is saving the most lives with a limited amount of money, there is lower-hanging fruit.
- kryogen1c 8y ago
  I really appreciate level-headed moralism like this. Many of our problems today are because we get painted into corners by people making emotional arguments and winning because the other side is unwilling to appear uncaring in the implied false dichotomy.
  - melling 8y ago
    Americans spend $12 billion on bottled water every year, for example. There’s enough money in the economy for people to pursue curing rare diseases. I wish we could spend more of our $15 trillion economy on research.
  - baldfat 8y ago
    Forget that. How is that a win. I make a statement and then he can say only a few thousands kids die so tough. Sure I'm emotional but I can give some good reasons why Pediatric Cancer Research needs more funding. Pediatric Cancer went over 20 years without a single chemo? How is that reasonable? https://www.theatlantic.com/health/archive/2013/01/our-disproportionate-focus-on-adult-over-pediatric-cancer-research/266684/ https://www.theatlantic.com/health/archive/2013/01/our-dispr... 1) Pediatric Cancer Treatments are beneficial to adult cancers. They have less side effects and are usually more effective due to the fact that children's bodies and cells are all growing. Most adult treatments are too harsh and attack all the cells. 2) Treat a 60 year old smoker for lung cancer and you gain maybe 10 years. Treat a 10 year old and you have 60+ years saved. Most adults get cancer because of poor life choices. 3) Save your own life as a full grown adult or save a child. MOST of us would choice to save the kid. https://phys.org/news/2014-08-driverless-car-child-life.html https://phys.org/news/2014-08-driverless-car-child-life.html
- the_grue 8y ago
  Disregarding the morality issue, Matt Might makes the argument that there are a lot more rare diseases than many people realize. About every instance of cancer is effectively a rare disease (even though we agree to classify them according to a taxonomy), because each is caused by some kind of unique gene mutation which requires a specialized treatment, just like genetic disorders. Furthermore, once a cancer is in the body, it can keep mutating, and one can have several (or many) slightly different kinds of cancer at the same time, which is one of the primary reasons it is so hard to treat them. So by creating tools to treat rare diseases we are getting closer to curing any and every kind of cancer.

ams6110 8y ago

Well it is rare, though. More kids are killed by automobiles than die of pediatric cancer. That doesn't make it any easier for those families dealing with pediatric cancer. But it is rare, and if your goal is saving the most lives with a limited amount of money, there is lower-hanging fruit.

kryogen1c 8y ago
I really appreciate level-headed moralism like this. Many of our problems today are because we get painted into corners by people making emotional arguments and winning because the other side is unwilling to appear uncaring in the implied false dichotomy.
- melling 8y ago
  Americans spend $12 billion on bottled water every year, for example. There’s enough money in the economy for people to pursue curing rare diseases. I wish we could spend more of our $15 trillion economy on research.
- baldfat 8y ago
  Forget that. How is that a win. I make a statement and then he can say only a few thousands kids die so tough. Sure I'm emotional but I can give some good reasons why Pediatric Cancer Research needs more funding. Pediatric Cancer went over 20 years without a single chemo? How is that reasonable? https://www.theatlantic.com/health/archive/2013/01/our-disproportionate-focus-on-adult-over-pediatric-cancer-research/266684/ https://www.theatlantic.com/health/archive/2013/01/our-dispr... 1) Pediatric Cancer Treatments are beneficial to adult cancers. They have less side effects and are usually more effective due to the fact that children's bodies and cells are all growing. Most adult treatments are too harsh and attack all the cells. 2) Treat a 60 year old smoker for lung cancer and you gain maybe 10 years. Treat a 10 year old and you have 60+ years saved. Most adults get cancer because of poor life choices. 3) Save your own life as a full grown adult or save a child. MOST of us would choice to save the kid. https://phys.org/news/2014-08-driverless-car-child-life.html https://phys.org/news/2014-08-driverless-car-child-life.html
the_grue 8y ago
Disregarding the morality issue, Matt Might makes the argument that there are a lot more rare diseases than many people realize. About every instance of cancer is effectively a rare disease (even though we agree to classify them according to a taxonomy), because each is caused by some kind of unique gene mutation which requires a specialized treatment, just like genetic disorders. Furthermore, once a cancer is in the body, it can keep mutating, and one can have several (or many) slightly different kinds of cancer at the same time, which is one of the primary reasons it is so hard to treat them. So by creating tools to treat rare diseases we are getting closer to curing any and every kind of cancer.