He has ALS. He can no longer speak. And he needs you to listen to him talk about it.

ALS took his ability to move. So he started a movement.

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:

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Disney has come under fire for problematic portrayals of non-white and non-western cultures in many of its older movies. They aren't the only one, of course, but since their movies are an iconic part of most American kids' childhoods, Disney's messaging holds a lot of power.

Fortunately, that power can be used for good, and Disney can serve as an example to other companies if they learn from their mistakes, account for their misdeeds, and do the right thing going forward. Without getting too many hopes up, it appears that the entertainment giant may have actually done just that with the new Frozen II film.

According to NOW Toronto, the producers of Frozen II have entered into a contract with the Sámi people—the Indigenous people of the Scandinavian regions—to ensure that they portray the culture with respect.

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Though there was not a direct portrayal of the Sámi in the first Frozen movie, the choral chant that opens the film was inspired by an ancient Sámi vocal tradition. In addition, the clothing worn by Kristoff closely resembled what a Sámi reindeer herder would wear. The inclusion of these elements of Sámi culture with no context or acknowledgement sparked conversations about cultural appropriation and erasure on social media.

Frozen II features Indigenous culture much more directly, and even addressed the issue of Indigenous erasure. Filmmakers Jennifer Lee and Chris Buck, along with producer Peter Del Vecho, consulted with experts on how to do that respectfully—the experts, of course, being the Sámi people themselves.

Sámi leaders met with Disney producer Peter Del Vecho in September 2019.Sámediggi Sametinget/Flickr

The Sámi parliaments of Norway, Sweden and Finland, and the non-governmental Saami Council reached out to the filmmakers when they found out their culture would be highlighted in the film. They formed a Sámi expert advisory group, called Verddet, to assist filmmakers in with how to accurately and respectfully portray Sámi culture, history, and society.

In a contract signed by Walt Disney Animation Studios and Sámi leaders, the Sámi stated their position that "their collective and individual culture, including aesthetic elements, music, language, stories, histories, and other traditional cultural expressions are property that belong to the Sámi," and "that to adequately respect the rights that the Sámi have to and in their culture, it is necessary to ensure sensitivity, allow for free, prior, and informed consent, and ensure that adequate benefit sharing is employed."

RELATED: This aboriginal Australian used kindness and tea to trump the racism he overheard.

Disney agreed to work with the advisory group, to produce a version of Frozen II in one Sámi language, as well as to "pursue cross-learning opportunities" and "arrange for contributions back to the Sámi society."

Anne Lájla Utsi, managing director at the International Sámi Film Institute, was part of the Verddet advisory group. She told NOW, "This is a good example of how a big, international company like Disney acknowledges the fact that we own our own culture and stories. It hasn't happened before."

"Disney's team really wanted to make it right," said Utsi. "They didn't want to make any mistakes or hurt anybody. We felt that they took it seriously. And the film shows that. We in Verddet are truly proud of this collaboration."

Sounds like you've done well this time, Disney. Let's hope such cultural sensitivity and collaboration continues, and that other filmmakers and production companies will follow suit.

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Not everyone thinks that women are tomatoes. This year's CMA Awards celebrated women, and Sugarland's Jennifer Nettles saw the opportunity to bring awareness to this issue and "inspire conversation about country music's need to play more women artists on radio and play listings," as Nettles put it on her Instagram. She did it in a uniquely feminine way – by making a fashion statement that also made a statement-statement.

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