MuscularDystrophy
Latest
Old drug gets an absurd price hike to $89,000 per year
Martin Shkreli doesn't have a monopoly on jacking up drug prices. Marathon Pharmaceuticals has received FDA approval for an old drug used to treat Duchenne muscular dystrophy, deflazacort, and in the process has raised the price to ridiculously high levels. You could previously import the generic medicine for about $1,200 per year, but it now costs a staggering $89,000 per year -- "just" $54,000 with discounts and rebates. And since deflazacort (now rebranded as Emflaza) is classified as an orphan drug used to treat a rare disease, Marathon will both have a 7-year exclusive on US sales and a voucher to fast-track a future approval.
Hack a Day modder builds a custom controller for disabled gamers
Sure, when tinkerer Caleb Kraft found out that pressure switches marketed at the disabled were massively overpriced, he got mad like anybody else. But then he decided to get even the best way he knew how: by building his own, and posting the plans for all to follow on Hack a Day for free. The project came about via a kid with muscular dystrophy named Thomas, who enjoyed Minecraft but may eventually lose the ability to hold a controller or use a mouse and keyboard. Caleb's idea was to build low-pressure switches using a 3D printer and simply map them to the Minecraft keyboard and mouse commands using a $20 Teensy board. He posted his plans online, but since he feels they could be improved on, also created a site called the Controller Project (see the More Coverage link). From there, those in need of a custom device can make a request, other modders can post their own plans and builders can use them to make controllers for donation. Since more is always merrier for such things, if you have those skills or know someone who needs them, hit the source for more info.
Climber to wear HAL cyborg suit, carry quadriplegic man to summit
We're still waiting for someone to toss one of these HAL cyborg suits on and do battle with the forces of evil, but until then we'll have to celebrate the little things. Or not so little things, in this case. The "hybrid assistive limb" suits are going to be used by two mountaineers to ascend the peak of a Swiss mountain while carrying a 43-year old quadriplegic man and a 16-year old student with muscular dystrophy. The two climbers will start 930 feet below the summit, with one carrying the 43-year old Seiji Uchida on his back, and the other dragging the 16-year old Kyoga Ide in a sled. Sounds like quite the task, even with a muscle aiding cyborg suit, but we're sure the climbers could totally p0wn any ninjas that might come in between them and the summit.[Via The Raw Feed]
