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Merry & Bright – EEG Illumination project for ALS awareness led by an ALS patient

The END ALS Association announced the launch of their Merry & Bright – EEG Illumination project to enable Masahiro “Hiro” Fujita, founder of the association and an ALS patient himself, to share his Christmas spirits with friends and family.

Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease or Lou Gehrig’s disease, is a disease of the nervous system that causes death of neurons controlling voluntary muscles. It is characterized by stiff muscles, muscle twitching and gradually degrading tissues. ALS commonly begins with weakness in arms and legs and difficulty in speaking or swallowing, eventually leading to complete paralysis and inability to swallow or even breathe.

Masahiro “Hiro” Fujita, 40, is a planning director at the international advertising agency, McCann Erickson Japan. He was diagnosed with ALS in November 2010 and became wheelchair bound the following March. As the disease progressed, he lost some vital functionality of the body and was placed on artificial respirator in January 2012. In January 2013, the 40 year old received a tracheostomy, completely depriving him of his ability to speak.

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Fujita now works for his agency and END ALS using the Tobii eye-tracking system that allows him to operate a computer with blinks and eye movements. He is a recipient of numerous awards including winning at Cannes Lion and ACC Japan with his STILL LIFE project. He also wrote a book, “99% Thank you: Things even ALS can’t take away”, which was published in November 2013 and became one of the highest selling books in Japan.

Since Masahiro has now completely lost his movement and any means of communication with his friend and family, Merry & Bright – EEG Illumination project was launched to help him share his Christmas with everyone. His room was decorated with numerous lights which were lit up using his brainwaves.

NeuroSky’s mindwave headband (EEG biosensor technology) was connected to the lights by LAB 13 and was placed inside Hiro’s santa hat. The waves were then used to light up the illuminations in different colors. The decor was done by Yohei Taneda, a Hollywood production designer.

Another objective of the project is to spread awareness about the disease. The 2014 ice bucket challenge did bring ALS under the spotlight however, there’s still no cure.

About END ALS Association

END ALS Association was founded by Masahiro Fujita in September 2012, after he was diagnosed with the disease. The main goal of the organization is to spread awareness and allow a better understanding of the uncurable disease, to make sure the patients are well taken care of.  It also provides guidelines for dealing with an ALS patient, keeping their comfort at the utmost importance.

Mission:

  1. Work to establish a treatment for ALS
  2. Call out for change in the government’s medical care policy to keep sure ALS patients remain a member of the society.

According to the website, “The average survival for an ALS patient is 2 to 5 years. In the world, 400,000 suffer from the disease. In Japan, there are more than 9,200 patients. ALS Association was founded by Hiro Fujita in 2012 for two reasons. 1. To make ALS famous and lead to a cure. 2. To make policy change to provide comfort.”

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Mariyam Tanveer

Recently graduated from LUMS, I now work as Researcher and a Freelance Writer on Ask Health News

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