“Technology for the disabled is “often a proving ground for the technology of the future.” – Stephen Hawking
My mother died of ALS when I was 15 after a 6 year struggle with the disease. When my sister told me about the ice bucket challenge, I was not in favor. It seemed cheesy and superficial.
I did some research on the challenge and on the current state of treatment for ALS patients. I assumed that no one but Stephen Hawking would get the cool voice thing and spiffy wheelchair, but I also assumed that despite there not being a cure, that some progress would have been made since my mom died.
Nope. Well, there’s a drug now, Riluzole, but it only extends survival, and I’m honestly not sure that’s a good thing. If I develop ALS, I don’t want to get entombed in my own body, while my family watches helplessly. But will I? It can be hereditary.
In 1991, the chromosome for hereditary ALS was identifed, and in 2011, a genetic link between ALS and a type of dementia was discovered. So I took advantage of a DNA service, like 23andme, as soon as it was available.
For a disease as nightmarish as ALS, that’s a pathetic improvement in 30 years. Since only 10,000 – 30,000 Americans have it at any given time, Big Pharma Don’t Care.
I donated my childhood to ALS, and I donate money every year to ALSA and I’d like to see some results.
Because of all that, I came around to the ice bucket challenge. Especially since I realized this could not have been done even a couple years ago. It really leverages current technology and the fact that everyone has it. Viral campaigns like this are going to become more prevalent and global – Chinese tech execs are now dumping ice and donating to ALS and Wired did the math for how long it will take for everyone in the world to do it (a bit under 35 days, if you care).
No FTP or FireWire needed
Imagine asking people a couple years ago to film themselves doing something and then somehow upload it to a computer where everyone could easily watch it. Uploading video got easier maybe 3-5 years ago, and cloud storage helps by providing a place to store all that video, but not too many people had Flip cameras or home video cameras with FireWire and a PC with editing software and the right ports. Now, the confluence of smartphones that include really nice video capture and about 50 easy ways to upload, save, and share, and the maxim that every consumer is now a producer turns out to be true. Even celebrities just use their smartphone and social media to post their vids.
Most importantly, the campaign is working – As of Wednesday, August 20, the ALS Association had received $31.5 million in donations compared to $1.9 million during the same time period (July 29 to August 20) last year.  The problem is that they aren’t sure what to spend it on. Some of it will go towards quality-of-life care for ALS patients, things like physical therapy and depression therapy, but also speech-generating devices, ventilators, and wheelchairs that require less input from the occupant.
While medical companies are uninterested in researching a cure or prevention for ALS because of lack of profit opportunity (I can only hope that their CEOs and CFOs all develop ALS or Huntington’s or similar), tech start-ups could really add value to the lives of ALS sufferers and their families – and beyond.
The same startup that’s working on translating Stephen Hawking’s brainwaves to speech could use a funding boost from the ice bucket. If that tech were available it would make such a difference. I doubt most of the people dumping ice on themselves have thought about what it’s like to not be able to communicate, not even as much as a newborn can. To be able to think and feel, but unable to move or talk.
The brain-to-speech technology could be picked up by the military and intelligence communities. Hawking’s relies on an infrared tracker mounted on his glasses, which could easily be adapted. The signal doesn’t have to be converted to sound right there – it could be transmitted to an earpiece someone is wearing some distance away, effectively creating mental telepathy. Or we could use direct brain-to-brain communication.
Other brainwave-based technology that could benefit both ALS patients and Secret Squirrel types are things like the ability to send email with your brain, operate a vehicle with your brain, control robot limbs with your brain (which could also translate into controlling assistant robots with your brain, if you’d prefer Rosie or an exoskeleton to removing your meat limbs and replacing them with metal. The ReWalk exoskelly, which recently got FDA approval, seems like a good candidate for ALS folks. The leg-based load-lifters can help the military and early-stage ALSers.
Autonomous cars could give ALS patients, well, autonomy. I could lift my mother into and out of a car by age 12, but I couldn’t drive her anywhere until I got my special permit at 14. Loading up her special wheelchair was actually harder for a tween/teenage girl, and once she became unable to operate it, I had to lean awkwardly over her and walk alongside to do it for her. A Myo armband interface would have been such an improvement.
While I understand that most of the folks who donated money because of the ice bucket challenge wouldn’t want to fund military or intelligence gear, I’m totally okay with leveraging tech transfer to help ALS patients and their families. As long as there’s help, I don’t really care where it comes from, and there’s no Big Pharma or Susan G. Komen for ALS.