ALS entrepreneur frees others

by Bruce Kasanoff on September 15, 2011

(This is a piece of fiction I hope becomes true very soon.)

“I will never leave a fallen comrade.”

They tell me that’s the most important line in the soldier’s creed. I live by it.

I am one of the lucky ones. I have ALS, and have been “locked-in” for three years. For nine months, I had no way to communicate with the world. Couldn’t talk. Or write.

My wife left. It was hell.

My brother, Jim, stuck by my side. He got me a BCI, or brain-computer interface. I type by looking at a screen. Letters flash in a repeating pattern. When I see the right one, my brain goes “aha!” and the letter gets added to whatever I’m writing.

One year in, I was emailing, slowly. Each paragraph took about 15 minutes. It was a miracle.

Emailed my accountant and some friends. Tested my ideas, and checked my bank balance; I’ve been lucky, it was better than expected. Hired an assistant, then a programmer, Ted. Decided to start a firm. Guess what we make?


First task was to give me more lifelines. Ted built a navigation interface for me, so I could open files and surf the web using the same sort of “aha!” brain signal. It also lets me play songs, control the lights, call my assistant…

Ted even built me an avatar. Using hot buttons, I can make it smile, cheer, grimace, clap, jump or 97 other actions. It makes in-person interactions a lot more natural. (When someone’s in the room with me, I keep the avatar on one screen and my flashing letters on the other. With people I know well, I can react almost in real time (or, when I get excited, ahead of real time!)

OK. I was back in business. Wrote a mission statement: free everyone else like me.

Gave it to a grant writer, Lisa, and hired a biz dev guy, Mark. Lisa brought in $457,000 the first 12 months. Mark reached out to leading BCI labs around the world, found the smartest technology firms in this area, and – our big break – discovered a billionaire-who-wishes-to-be-anonymous whose sister is locked in.

Mr. B. put $5 million into my firm. That let us take Ted’s programs and make them ready for prime time (add help screens, get rid of the bugs, design pretty interfaces…)

The grants let us start training BCI assistants. Remember, our clients can’t do anything for themselves, at least until we get involved. The money also helped us start finding the people we are trying to free. One of the problems serving our client base is that they don’t (can’t) call their friends and recommend our services. Even when we restore their ability to communicate, their locked-in friends don’t have a means to receive such messages.

So we started building a database of ALS patients worldwide. It seems to be the first. I realized the more names we found, the better we could validate the market size and demonstrate our growth potential. So now five interns work on the project, with one FT manager.

Applied for more grants. Learned how to help get funds for our clients to pay for our services. I will never abandon someone with ALS. Somehow, we find a way to pay the expenses.

(BTW, sorry if my sentences are too clipped; it saves me time.)

Two years in, we had 15 employees. One, a talented kid named Clara, was joking with me, “When do I get to use some of these toys?”


The bigger the market, the more investors pay attention, and the greater the economies of scale. Stuff gets cheaper. Thanks to Clara, I realized we should be selling BCIs to healthy people. After all, the vast majority of people don’t have ALS; they aren’t locked in. If I could convince healthy people to use BCIs, I could drive the cost of our headsets down from thousands of dollars to less than a hundred.

But why would a healthy person use a BCI? They are slow beyond belief. Much faster to type than to watch flashing letters one at a time, etc.

Gathered the team, and we brainstormed.

There are numerous situations in which your brain generates a recognizable change in activity. To name a few, when you:

- realize you have made a mistake
- recognize a face or object
- are fascinated
- grow weary
- become bored

For example, when you realize you just hit the wrong letter on a keyboard, your brain sort of goes “oops.” Your brain waves change. If your typing program knows exactly when you thought “oops,” it can highlight the letter you typed just before your brain went “oops.” Then, it can show you some likely replacements. When you see the right letter, your brain sort of goes “aha!” The program could automatically fix your error.

Congratulations. You just corrected a typo with your thoughts.

A BCI could help you teach Microsoft Word new words. Imagine you type an acronym the program has never seen before. The program highlights the “error,” but then does not detect any indication that you made a mistake. In other words, it “senses” that you are confident this word is correct. So the program eliminates the error message, saving you the time of manually adding the word to your dictionary.

A BCI is the only device we can think of that offers complete and total privacy to its user.

You could sit across from a person at a table, give instructions to your BCI, and the other person would have no idea. You could remain motionless and silent, but your instructions could put actions in motion far outside the room in which you are sitting.

Since BCIs are so crude today – they cannot read your thoughts, not by a long shot – this idea requires a very, VERY, simple interface. Think: two or three signals, tops. Such as “yes” or “no.” Fortunately, yes and no can take you a long way.

We came up with the idea of combining a BCI with a wireless phone. The phone has no controls whatsoever; is looks like a Bluetooth earpiece and is only designed for incoming calls. It is designed for executives to use with their assistants. We call it: EitherOr. Basically, someone calling you on this device can give you the choice of either one option or another, and your brain will think “aha!” when you hear the right choice. The BCI recognizes this response.

On a regular basis, your assistant checks in with you by calling your earpiece. You hear her, but what she hears in return is an automated voice that says either “yes” or “no,” or “the first choice” or “the second,” based on which response your brain triggers. On each call, she follows a similar pattern, asking:

“Do you need my help?” (If “no,” she hangs up.)
“Would you like me to pull you out of the meeting?” (If “yes,” she comes and gets you.)
“Do you need access to important facts, or would you like a colleague to join you? (You answer “first.”)
“Do you need budget estimates or opinions from outside experts?” (You answer “first.”)
“Do you want sales for this quarter or next quarter?” (You answer “first.”)

“Sales for this quarter are projected to be $3.4 million, breaking down as follows. The Northeast will generate $750,000, which is a rise of 7%…”

Someone sitting across the table from you will have no idea what is happening. You are perfectly silent, and moving normally. EitherOr is a secret weapon, or a discrete tool, depending on whether you like wartime analogies or not. I do, given my obsession with never leaving a fallen comrade behind.

Over the past four months, we sold 250,000 units. This Christmas, we are coming out with a toy version that kids can use, and preorders just topped 3.7 million units. We make $20 each, which totals to $74 million in sales.

Tomorrow, my dream will start coming true. We are going to announce that our BCI systems for ALS individuals will now be free. Yes, free. Sales to business executives and kids will completely cover the cost of these higher end units. There’s still much work to do finding locked-in individuals and training the assistants each one needs, but that’s all doable.

The tough part was figuring out what a healthy person could do with a BCI. Doing so set all my comrades free.

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