Touched (2015)

"Medical research campaigns do not really go viral. We do not get a ton of people donating $5. You should consider donating as much as you are comfortable with."

Perhaps today we can make a difference, Mihai. I wish you much happiness and joy each day you have.

https://www.ebresearch.org/donate.html

http://www.sohanaresearchfund.org/donate/

https://www.debra.org.uk/donate/intro

http://www.debra-international.org (for donations via bank)

I have some unexplainable kind of respect and amazement towards people who stay human, honest, communicative and talkative like that, despite (or perhaps because of) knowing that their time is about to run out. They avoid dying before their physical death. They seem not to submit to despair.

I saw a documentary once about a man who had that disease, I can't recall its name now. Truly a horrible disease. I hope science can make progress on it in the coming years.

Btw, this article seems to be from 2015.

'Some conclusions' section reminds me of a short piece PG has once written on regrets of the dying. I find it amazing how consistent some of the points are -- happiness is your choice, cultivate friendships, say what you think and don't obsess with work.

Such a horrible and sad disease. I was introduced to it through (surprisingly) a Jeep club affiliated charity in the United States called Crawling for Reid. A few thousand off-road enthusiasts get together in South Pittsburg, TN to have a good time and raise funds for a small child with this unfortunate affliction. $120,000 USD was raised last year with record attendance and this year is set to raise even more. In particular, as I understand it, this charity benefits the little boy (Reid), primarily, as well as ongoing research. If you feel so inclined to donate, you may do so here http://crawlingforreid.com/donate/.

It might be nice to tag the headline (2015). A very moving read, however.