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How Hiro Fujita ’98’s perseverance in the face of unfathomable adversity has transformed awareness of ALS in Japan.
It is our great honor to announce Hiro Fujita ’98 as the second recipient of the ASIJ Alumni Impact Award, which is presented annually in recognition of alumni who have made a significant positive contribution in their field or pursuit. Hiro has worked tirelessly to bring awareness of ALS (amyotrophic lateral sclerosis), often referred to as Lou Gehrig's Disease, and raise money for research into advancement in medical treatment options. He is also an advocate for policy changes to ensure ALS patients have access to the care they need, particularly in Japan, through his nonprofit organization, END ALS.
Hiro himself was diagnosed with ALS in 2010, and has continued to support the ALS community even as his own condition has become more serious with time. The committee was deeply moved by Hiro’s efforts. “We have so many brilliant alums to choose from who have made significant contributions to their communities, but on a personal level, none have been more impactful to me than the work Hiro has done to advocate for ALS patients in Japan and bring awareness to those like him,” shared committee member Naomi Hayase ’99. “I continue to be inspired by his strength and bravery.”
Hiro, who first enrolled in 1995 as a high school freshman, was a star athlete and a well-loved member of his class. “Hiro is basically a part of my family. He pretty much lived at my house on the weekends when we were in high school, to the extent that my parents ended up offering me the master bedroom and putting an extra bed in it for Hiro to sleep in!” shared Ross Morimoto ’99. Many others agreed. “Hiro has this power to make those around him feel special,” commented Masako Yamaguchi Mizutani ’99. “He brings out the best in people.” Hiro’s impressive athletic accomplishments are immortalized in the 1998 Chochin, where he is featured in both the varsity football and varsity soccer pages. “Playing soccer and football, hanging out with friends, dating... ASIJ is so full of fond memories for me,” Hiro shared with us with the support of his helper, Chiaki Nakano.
After high school, Hiro went on to university at Hawaii Pacific University, and then moved back to Japan for a job at his dream company, McCann Erickson, a global advertising company. “He had this drive that really stood out amongst his peers,” commented Ross, remembering how excited Hiro was for the job. “I think the sky was the limit for him and where he could have gone in his career.”
Unfortunately, Hiro’s path took an unexpected twist in 2010. “In February 2010, I started to have difficulty lifting my arms. Over the next few months, my legs began to feel very weak and I struggled going up stairs. Finally I decided to go to the hospital,” Hiro shared with ASIJ in an interview in 2014. At first, he assumed it would be a standard visit where he would be prescribed medicine to fix the problem, but he began to grow nervous when testing lasted into a second week. “On November 26, 2010, I was told that I have ALS, a terminal disease that attacks your motor neurons, paralyzing every part of your body, eventually fatally affecting the lungs,” Hiro recalled. “All I heard was, ‘Your body will slowly become paralyzed and you will die. There is no cure.’”
At first, Hiro found it difficult to come to grips with his situation. “So many different feelings flooded my mind, and I was overwhelmed and confused,” he shared. “I couldn’t believe it. It felt like, ‘why me?’ I felt panicked and, at first, like it would be better if I was dead, but at the same time, I didn’t want to die.”
That night, Hiro watched every video about ALS that he could find online. It was hard, but he knew he couldn't run away from the diagnosis, and he wanted to be informed about his condition. “I would be strangely calm and then suddenly my heartbeat would jump to 500 bpm,” he recalled. “I was up all night on this roller coaster of emotions.”
Over the next few years, the disease began to have a more and more obvious impact on Hiro’s life. He recalls how first it became hard to brush his teeth and shave. Then he started tripping over nothing. Then one day, he sat on the sofa and was panicked to find he wasn’t able to get up. But at the same time, he felt strongly that he couldn’t just give up. “I needed to do something,” Hiro shared. “I felt like there had to be some meaning in the fact that I got ALS, that there must be something that only I could do for the cause.” After brainstorming with friends and family, Hiro came to realize that because he had a background in advertising, he was perfectly positioned to start a campaign to raise awareness about ALS and find a cure. And so, with the help of his father and friends, END ALS was born.
END ALS’s mission is two-fold: to raise funds to find a cure and to advocate for policy change to provide comfort in communication for people living with ALS. “Technology makes all of the difference in allowing ALS patients to live as normally and comfortably as possible,” Hiro explained in 2014. “For example, 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.” Through END ALS, Hiro is dedicated to providing agency and dignity to ALS patients worldwide. In his mind, it is integral to “give a voice back to those who are silenced, so patients can unite to raise awareness and demand a cure.”
As Hiro’s high school friends will attest, bringing people together and inspiring them is one of Hiro’s greatest strengths and one that allowed him to make great progress through END ALS despite his physical limitations. Through his eye tracking software, he used social media to raise awareness and meet fellow ALS patients all over the world, from Brazil to Germany to Taiwan to Norway. “The wealth of information shared is invaluable. It's a powerful tool for the global ALS community to work together to end ALS,” Hiro commented.
In January 2013, Hiro’s condition progressed to the point where a tracheotomy was necessary. This allowed him to breathe through a tube, but it also made it impossible for him to speak. However, Hiro felt more resolved than ever to keep advocating for a cure. “My voice is louder now that ALS took it away,” he shared, and sure enough, soon after, END ALS began to get more and more attention within Japan. Hiro was featured on several Japanese television programs in 2013, and he published a bilingual book about his experiences with ALS called “99% Thank You—Things Even ALS Can’t Take Away.”
The book received national attention and was featured on Japanese national broadcasting, helping to build momentum in END ALS’s visibility in the community. In June 2014, Hiro was invited to meet with the Minister of Health, Labor and Welfare to submit a proposal for policy to support the needs of ALS patients. Through END ALS, he has staged a wide variety of demonstrations and awareness events around Japan and worldwide, including charity running events in partnership with NIKE and widespread participation in the Japanese “Goron” ALS awareness campaign, where participants laid on the ground to illustrate and experience what ALS patients experience in their daily lives.
Even as his condition progressed, Hiro was selected to be an Olympic Torch Runner for the 2020 Tokyo Olympics, though he unfortunately was forced to step down in July 2021, after the Olympics were postponed. While Hiro now requires 24-hour care and can only communicate using his eyes, he continues to spread awareness of his condition through his YouTube channel, Facebook, and Instagram, and through the work of his END ALS colleagues. His perseverance even in the face of unfathomable adversity has inspired the ASIJ alumni community for more than a decade.
"Anywhere in the world it takes an incredible human to harness one's own suffering into action to benefit others,” commented Alumni Council President Deanna Elstrom ’85. “However, in Japan, where those suffering from severe illness often choose to avoid the public gaze, Hiro's activism and efforts to show what ALS looks like on a day to day basis are particularly remarkable. We chose Hiro for this award to honor him and all that he has done to raise awareness of ALS in Japan and push forward for a cure." Alumni Award Committee Co-Chair Gary Yamada ’00 agreed, stating, “Hiro has garnered support from countless people, and some of his most ardent advocates are his alumni friends. I felt that he has united the ASIJ community in a way that few others have done.” Gary’s comment rings true in the outpouring of support from Hiro’s friends and classmates in response to his nomination for the award. “No one has achieved a level of authenticity quite like him,” shared Joseph Forbes ’98. “He continues to inspire us in how we respond to life's adversity on a daily basis.”
Hiro, for his part, was extremely humble upon learning of his award. “I was shocked to hear I had been selected,” he shared with us through Chiaki-san. “It’s such an honor to receive this award — I can’t wait to share the news with my friends, family, and everyone at END ALS!” His strength and resolution while facing one of the most difficult conditions possible serve as inspiration for ALS patients worldwide, and through the Alumni Impact Award, we hope his story will inspire the ASIJ community as well. Hiro truly embodies his personal motto, “Live like you'll die tomorrow; keep learning like you'll live forever.”
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