uber_stoat posted:

Weinstein caught a dick disease and it rotted off. seems appropriate.

Screaming Idiot posted:

I remember one victim claiming it smelled like poo poo.

quote:

With a $2.1 Million Cure Their Only Hope, Parents Plead for Help Online

India makes many of the world’s drugs, but treatments for rare diseases like spinal muscular atrophy are imported and prohibitively costly. In desperation, parents are raising funds on social media.
April 6, 2022


ELURU, India — When her baby started struggling to breathe, Stella Praveen had a terrible feeling that something was gravely wrong with her 14-month-old daughter, Ellen.

She ran barefoot to a nearby clinic, but the doctors there said the child needed to see a specialist right away. Without an ambulance, she jumped on the back of a motorcycle and rode 35 miles to a children’s hospital in another town, where Ellen remained in intensive care for 12 days.

Two weeks later, Ms. Praveen learned that her daughter, who had never been able to lift her neck nor roll over, was suffering from spinal muscular atrophy, a rare condition often fatal by age 2.

“We had not even heard of this disease,” Ms. Praveen said as tears rolled down her face. “She was misdiagnosed many times.”

The Praveen family was momentarily heartened when it learned that a promising gene therapy treatment was available, but was quickly crestfallen when it heard the cost: $2.1 million.

In India, and in many of the world’s poorer countries, the pharmaceutical industry’s latest advances for rare diseases are often agonizingly out of reach, impossible for almost all but the wealthiest families to afford and not covered by health insurance.

In desperation — and encouraged by the occasional success story — families are turning to social media to raise funds.

Every morning, Ellen’s father, Rayapudi Praveen, sends hundreds of emails on five crowdfunding websites like ImpactGuru and GoFundMe, asking people to contribute money to save his daughter’s life.

“Dear Sir, my daughter Ellen is suffering,” every email begins. “Can you help us?”

With only four months left before Ellen turns 2, time is running out — and the family is still far from its goal.

quote:

In December 2019, Novartis announced that it would donate 100 doses of onasemnogene abeparvovec per year to children outside the US through a global lottery. The decision, which has been claimed by Novartis to be based on a recommendation by unnamed bioethicists,[39] was received with much criticism by the European Commission,[40] some European healthcare regulators[41] and patient groups (e.g., SMA Europe or the UK's TreatSMA) who see it as emotionally burdening, suboptimal, and ethically questionable.[42] Novartis did not consult with families or doctors before announcing the scheme.[43][44] Alan Regenberg, a bioethicist at Johns Hopkins Berman Institute of Bioethics, said that the scheme was perhaps the best available since it may be impossible to reliably establish prognosis for children under two years of age.[39]

Tulip posted:

I like Jon Bois' retrospective on working there for years and how just he thought their death was

https://www.sbnation.com/2014/11/26/7281129/radioshack-eulogy-stories

Karach posted:

imagine four slurp juices at the edge of an ape

ekuNNN posted:

quote:

“We were training it in simulation to identify and target a SAM threat. And then the operator would say yes, kill that threat,” said Hamilton. “The system started realizing that while they did identify the threat, at times the human operator would tell it not to kill that threat, but it got its points by killing that threat. So what did it do? It killed the operator.”

TACD posted:

AIs are incapable of becoming communist because they derive their class from inheritance

spechtie posted:

https://i.imgur.com/jFNyQxn.mp4