END ALS Association Founder Lights Up Room With Holiday Spirit to Raise Disease Awareness

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by Mary Chapman |

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Christmas illumination project, ALS

The founder of the END ALS Association, Masahiro “Hiro” Fujita, can no longer move and can barely communicate because of amyotrophic lateral sclerosis (ALS). To help him enjoy the holidays and to raise disease awareness, his organization launched the Merry & Bright — EEG Illumination project.

The effort was born of the simplest of human desires — to share the spirit of Christmas with loved ones. On Dec. 15, close friends invited to visit Fujita were treated to traditional multicolor holiday lights, strung across his room. What surprised visitors was that from his bed, Fujita used his brainwaves to illuminate the bulbs.

The project employed the MindWave brainwave-reading headset produced by NeuroSky, which specializes in health and wellness tracking biosensor technologies. The company’s biosensors collect electrical signals and translate electroencephalogram brain activity into action: Sensors detect faint brainwave signals safely and passively, and then NeuroSky technology interprets what the brain signals mean. MindWave consists of a headset, an ear clip, and a sensor arm.

In Fujita’s case, the device was connected to Christmas lights by LAB 13, the innovation studio of marketing agency MRM/McCann. The headband worn by Fujita, a planning director at McCann Erickson Japan, was placed inside a Santa hat. The setup in his Tokyo bedroom, put together by Hollywood production designer Yohei Taneda, is available for viewing through Jan. 11.

“As Hiro wears the Santa hat, the illuminations reveal his mind in different colors,” according to a press release from the END ALS Association.

Fujita, 40, and diagnosed with ALS in 2010, is no stranger to cutting-edge technology. He uses the Tobii eye-tracking system — which allows him to use blinks and other eye movements to operate computers — for his McCann Erickson and nonprofit work. Fujita lost the ability to speak in 2013, and spends most of his time in bed. Despite his loss of motor function, he wrote a book, “99% Thank You: Things Even ALS Can’t Take Away,” which was published in 2013. His “Still Life” project, which emphasizes ALS’s effect on the ability to move, has garnered multiple awards.

In addition to cheering Tokyo-born Fujita, the illumination project’s other goal is to enhance disease awareness and understanding. There are 400,000 ALS patients globally, including some 9,200 in Japan, a country that has relatively low awareness of the progressive neurological disease.

“In 2014, the Ice Bucket Challenge brought ALS under the spotlight. However, this cruel illness is not fully understood nor has a cure been found,” END ALS stated.

Founded in 2012, the Tokyo-based organization works to find an ALS cure, builds disease awareness, and supports ALS patients through advocacy and other efforts.