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ALS doesn't strike with a terrifying blow. It is a gradual, creeping illness. A thousand tiny cuts that slowly add up.

For Hiro Fujita, amyotrophic lateral sclerosis started with his arms feeling heavy. Then his legs began to hurt and it became harder to climb stairs. He went to the doctor almost as a precaution, expecting to be told it was nothing serious.

Instead, on Nov. 26, 2010, Hiro was diagnosed with ALS. It is the same devastating disease suffered by astrophysicist Stephen Hawking. Hawking has lived 50 years with ALS. Hiro was told he could expect to live three to five years at most before the disease attacking his motor neurons shut down his body completely.


By 2012, ALS was taking hold of Hiro's body. He had trouble lifting his arms. He broke his front teeth after tripping over nothing. Getting up from the couch became a question of if rather than when.

As his body slowly stopped being able to move, Hiro's mind was racing. He had to do something. It was time to start a movement and find a cure.

In late 2012, Hiro launched his foundation, End ALS, with two very simple goals: (1) Make ALS famous and find a cure and (2) change government policy so people living with ALS can affordably access technology that lets them live more comfortable lives.

An End ALS supporter wears her shirt proudly. All proceeds from shirt sales benefit the organization and its work toward a cure for ALS. Image by Hiro Fujita/End ALS, used with permission.

Over the last four years, Hiro has worked nonstop toward those goals. He's built a movement, spoken at conferences, written a book, and done the Ice Bucket Challenge.

Hiro with End ALS supporters in 2015. Image by Hiro Fujita/End ALS, used with permission.

He's done all of this while still working as an planning director at a Tokyo ad agency — thanks in large part to technological advances helping people with ALS live more normal lives. In an interview with Facebook last year, he talked about one innovation in particular:

"I use Tobii eye tracking software so I can control my computer cursor with my eyes. Japan's insurance doesn't cover it unless you can only move your eyes, but every person in need deserves it. ... It enables me to work on END ALS. It also lets me access Facebook, which is my main way to connect and hang with friends. It is a way for me to live my pre-ALS life through others. It can be painful to see what you’re missing out on, but it's comforting it still exists. Not to mention all of the long and short 'stay strong' messages."

"I am 99% grateful for all that has happened in my life. But 1% angry."

That's the most poignant quote from Hiro's very popular talk at TEDx Tokyo in 2014. A year earlier, he'd had a tracheotomy and lost his voice. No matter. He spoke anyway, using text-to-voice software. He plans to keep speaking. However he can. As long as he can. As he says in his Facebook story:

"I can no longer speak, but it does not mean I am giving up. My friends give me strength and I will keep fighting. For myself. For others. For a cure. My voice is louder now that ALS took it away."

Watch Hiro's presentation at TEDx Tokyo:

via UNSW

This article originally appeared on 07.10.21


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