Neuromancer49

Eh, college is hard and so was his sport. Sure, it's not an exhaustive battery of testing but I'm confident to say he's a normal dude.

That's the short of it - but we passed all brain data to a university affiliated neurologist for review. We also allowed participants to take a copy of their brain data if they wanted. I've got a CD of my own brain kicking around somewhere, and I even helped a few people 3D print their brains.

But, anything that I said about the participants brain opened me up to liability. What if I said their brain looked OK and there was a tumor? Or vice versa? The University felt I could be sued, so we were trained to not speak about their brain.

Well it's not quite water, it's cerebrospinal fluid and it plays a lot of important roles in waste clearance, immune protection, protection from concussion, and more.

Nope, not related to any disease I've ever seen. The best guess i have is fetal alcohol syndrome but it isn't a perfect match. It's just weird knowing he has a very odd shaped brain. And there's a lot of unknowns surrounding it.

What if he sees another doctor and they mention it to him? Would he be upset I didn't say anything? What if it is linked to some disease and I didn't tell him, and he gets sick?

What if it's hereditary and his kid has it, does it explain the motor delays? The premature birth? The problems they have with him sleeping?

Just a lot of unknowns.

We've actually seen a handful of them in the community. MIT has an "Interesting Brain Project" https://news.mit.edu/2023/studies-of-unusual-brains-reveal-insights-brain-organization-function-0221.

If you're born that way, odds are you'll be more or less normal. It's amazing to see how resilient the human brain is.

In fact, one woman in China was born without a cerebellum. She wasn't exactly normal per se, but she was alive and more or less healthy. Even though the cerebellum is smaller by volume it has about the same number of neurons as the cerebrum. So she just had half a brain. https://www.newscientist.com/article/mg22329861-900-woman-of-24-found-to-have-no-cerebellum-in-her-brain/

I ran a lot of MRIs for my PhD. I saw somewhere around 100-200 different brains. About 10% of them had abnormalities. Of all the technicians, scientists, and (non-clinical) doctors I spoke with, we all agreed this was a very high rate of discovery. All my friends graduated without seeing anything weird. My advisor liked to joke that I was cursed. Eventually I stopped inviting my friends to do my experiments because I didn't want to deal with the risk of them having an abnormality - thanks to some combination of HIPAA and medical liability laws, I wasn't allowed to say anything about it, even if asked point blank. I didn't like that very much.

I made one exception, as a friend of mine came in for a study and I saw a golf ball sized cyst in his sinus. He had it surgically removed and he told me he stopped snoring the next day. It felt good to make a difference for him.

But, I saw one brain similar to the one documented here. It belongs to one of my close friends. It was harrowing. Entire left hemisphere was malformed, the ventricles were way too big and the cortex was way too thin. But the right side of his brain was underdeveloped, maybe the size of a tennis ball.

The weirdest part, he is 100% normal. In fact, he competed at a high level of college athletics. Normal Cognition, normal motor function, great sense of humor, and a very caring person. Now he has a great job, wife and kid, and we hang out often. But I can't bring myself to say anything, and every time I see his son I wonder about his brain.

Pharmaceuticals in the US. Fairly early in my career, get paid just short of $100k/year. All it took was getting a doctorate and selling a little bit of my soul.

Sometimes I miss academic research. But at the end of the day I'm getting paid about 4x as much while working 1/2 the hours, by my estimate I'm 8x as happy now. Plus, there's something to be said for working on projects that actually affect people's lives instead of overstating the impacts of my research to compete for a dwindling pool of federal grants. Seeing the policy changes in the US this year, I'm very glad I left academia but I'm not convinced I'm 100% safe from changes made at the FDA.

Hey, the NHS in the UK sometimes does things, too!

Looks like the WHO also leads vaccine strategy meetings, according to the ECDC. https://www.ecdc.europa.eu/en/seasonal-influenza/prevention-and-control/vaccines/vaccination-strategies

So I think the odds that no vaccines are available in the US are low, but I don't know if the same flu strains are targeted across the pond.

My favorite AI fact is from cancer research. The New Yorker has a great article about how an algorithm used to identify and price out pastries at a Japanese bakery found surprising success as a cancer detector. https://www.newyorker.com/tech/annals-of-technology/the-pastry-ai-that-learned-to-fight-cancer

I kept a few recipes from a subscription I was gifted. Honestly, replacing the missing ingredients has been more fun than cooking the boxed meals.

I wish the authors had called out the company by name in the summary - Novartis is one of many pharmaceutical conglomerates raising the price of life-saving therapies. This particular drug is a flagrant example of price gouging, and it will take a lot of effort to fix the problem of cost.

However, a new system has to carefully skirt around a very real issue - how can we provide market incentive to cure rare diseases? We are going through a quiet Rennaisance where advances in gene therapy and immunotherapy have provided us with the tools to cure most neurodegenerative diseases. However, most are considered rare diseases and the development of these drugs is very expensive (billions of dollars). Under capitalism, companies have to grapple with the horrific fact that curing a disease that affects ~1 in 300,000 with an expensive drug is a "bad investment".

Currently, the FDA offers a program where a company that develops a rare disease medication earns a credit for expedited review on a future program. These credits can be sold and traded, and are worth their weight in gold. But, rare disease medicines in the US benefit from longer periods of exclusivity which lets companies maintain high prices for even longer. In the UK, the NHS can rule the price of a drug does not provide enough benefit to society, and elect not to cover the medication, providing incentive to lower prices. I'm less familiar with the EU regulations.

Well shit. That makes a lot of sense.