Comment below.

Regards,

jrs
On Aug 26, 2014, at 11:25 PM, Dibyo wrote:

> ​I found this -
> http://www.vox.com/2014/8/20/6040435/als-ice-bucket-challenge-and-why-we-give-to-charity-donate
> - which looks at some stats on deaths vs. money raised.
> 
> It's interesting that Diabetes and Chronic Pulmonary Obstructions (is this
> related to Asthma?)​
> ​ feel underfunded if one goes only by this chart. But another thing the
> article mentions is that simple fixes in developing countries (as opposed
> to the US) will have a far bigger impact than anything done in the US. This
> seems very intuitively true to me.
> 
> Dibyo
> 
> ​

This is an interesting article that makes some good points but glosses over 
others. 

I lost a brother to ALS; he was only 45 when he died (after 5 years of 
illness), so naturally I'm sympathetic to giving money to ALS causes. But there 
are other considerations that affect my charitable impulse beyond a sentimental 
desire to "get" the disease that got my brother.

For one thing, researchers have been making really exciting discoveries about 
the causes and mechanisms of ALS. A breakthrough feels tantalizingly close. I 
don't know if this is the case with other diseases -- like the brain cancer 
that took my sister at a young age or the breast cancer that took my 
sister-in-law at a young age -- but to my naive understanding, ALS seems closer 
to a breakthrough than those cancers. I want to help make that breakthrough. 

For another thing, many of the most promising lines of ALS research use 
embryonic stem cells. However in the USA, by law federal money cannot be used 
for projects that use embryonic stem cells.[1] The U.S. government (through the 
National Institutes of Health and National Science Foundation) is the largest 
source of research money. That implies that some of the most promising lines of 
research are not eligible for financial support from the largest financial 
supporter.  Project ALS, on the other hand, is entirely privately funded, and 
is thus not subject to restrictions on embryonic stem cell research. I support 
Project ALS because the government (and my tax dollars) don't. [2]

For a third thing, we already know how to reduce the impact of killers like 
cancer, heart disease and diabetes. Obesity, sedentary lifestyles, tobacco and 
environmental pollution are all implicated. I support projects designed to get 
people to change unhealthy behaviors, and I understand that research may be 
needed to figure out the best way to do that. But social science research is a 
lot, lot cheaper than fundamental laboratory science of the kind Project ALS is 
doing. We already know how to prevent many, many cases of heart disease, 
cancer, diabetes. Why we're not preventing them is a separate problem. But we 
don't know how to prevent ALS. 

Similarly, I support projects to improve the health of extremely poor people 
around the world by things like improving local water supplies and providing 
mosquito nets. But successful, non-governmental projects in areas like this are 
often done by small charities or NGOs which are not set up to reliably handle 
an influx of tens of millions of dollars such as created by the Ice Bucket 
Challenge. 

NOTES:

1. The situation on funding & state and federal restrictions on embryonic stem 
cell research is actually considerably more complicated, as explained by 
wikipedia:

http://en.wikipedia.org/wiki/Stem_cell_laws_and_policy_in_the_United_States

However, by not relying on Federal $$, Project ALS avoids many actual and 
potential roadblocks, leaving its scientists free to focus on science. 

2. Project ALS: http://www.projectals.org

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