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$220M is the global total amount. There are multiple ALS organizations in different countries. $115M is only the amount the US ALS organization received, and it is all accounted for here http://www.alsa.org/fight-als/... , fundraising and transaction processing costs were only 4%. It does appear this charity is one of the good ones that doesn't spend all its money on itself.

Recent law changes have made ALS approval much more streamlined. It is less likely now that the approval process will get stalled out until the patient is dead (which was the reality not all that long ago). The ALS Association is a great resource which has a lot of devices that are available for loan. Families can send the device back when the patient is done with it.
With children with severe disabilities like Down Syndrome, think about the overall cost savings associated with providing a communication system in very early childhood, which will lead to language and cognitive gains that would not have otherwise been possible. Instead of a severely mentally retarded individual, effective communication can make the person employable and reasonably independent. I don't know how high they could "lift up" but at least you could get them to reach their bootstraps. (And if you "[citation needed]" me I swear I will dump a reading list on you so long that you'll demand a masters degree when you get to the end of it).

People who serve in the military are twice as likely to get ALS as people with no military service. I don't think anyone knows why but apparently the government is agreeing that they should help out vets who contract it. ALSA has a pdf with information about it - ALSA military paper.

People who serve in the military are twice as likely to get ALS as people with no military service. I don't think anyone knows why but apparently the government is agreeing that they should help out vets who contract it. ALSA has a pdf with information about it - ALSA military paper.

I'm one of those douchebags. The ALS makes my legs and trunk too weak for me to stand unsupported, and my neck won't hold my head up unless I lean it back far enough to balance. I'll try to piss my pants next time, so as to avoid bothering you.

Oh yeah: if you want to do something in Dr. Hawking's honor, drop a few coins ALSA's way. The DNA of the foundation my mom started after my dad was diagnosed is a part of the current charity.

What does sound on Linux have to do with Stephen Hawking? Am I missing something here?

Oh, wait... does his voice synthesizer run on Linux?

I lost my dad to ALS when I was 12. He was diagnosed when I was 8. 46 years with ALS is literally unprecedented. Most people don't make it to the 5th year after diagnosis. I hope he's willed his body to science because his final act of discovery might be to help medical science figure out how to slow the progression of the disease.

Oh yeah: if you want to do something in Dr. Hawking's honor, drop a few coins ALSA's way. The DNA of the foundation my mom started after my dad was diagnosed is a part of the current charity.

http://www.alsa.org/research/article.cfm?id=1155&C FID=4087183&CFTOKEN=75996565

Stem Cell Strategy Shows Challenges for ALS