A treatment is available but it doesn't seem to work in some cases. The author of the post is motivated to improve that. Honestly, I feel happy when people choose to spend their time trying to solve these types of problems instead of working on things they may not be that interested in or on problems where success doesn't really yield a real benefit to humanity.
Maybe, he spends a lot of time on it and doesn't have success. That seems better to me than spending time on something he doesn't really care about.
Even just fundraising for diseases yields tangible results. Some folks dismissed the viral ice bucket challenge, but it raised over $100 million dollars and funded a lot of research in ALS: https://en.wikipedia.org/wiki/Ice_Bucket_Challenge
Hopefully he accomplishes new knowledge discovery and/or fundraising for research into this disease.
He's probably really shaken that the future he imagined may not be in the cards for him and his partner.
I had a positive reaction to his post. The way he wants to spend his time seems more useful/meaningful/intentional than what most people choose to spend their time on. I hope he has success. While rare, others who have devoted themselves to studying the disease of a loved one have made meaningful progress: https://en.wikipedia.org/wiki/Augusto,_Michaela,_and_Lorenzo...
Hyundai is investigating 12.6 billion dollars in Georgia, and the response is to raid the facility and arrest ~500 people working there. How does that benefit Americans? Korea is pumping money into our economy, and we throw the people working there in jail. For what? Working?
If Hyundai's operations keep getting disrupted, they can't justify spending billions here. Other international companies also won't waste their time investing and building infrastructure here. They'll spend it somewhere else. What is pro-American about this? Is the Republican party now anti-money? Anti-capitalism? How is this a win for Americans or Republicans or conservatives or anyone?
Maybe, he spends a lot of time on it and doesn't have success. That seems better to me than spending time on something he doesn't really care about.