World ALS Day initiative looks to deepen understanding of disease in Japan

Fujita is the founder of the End ALS Association as well as a planner at McCann Worldgroup Japan. The commercial is part of an ongoing project to raise awareness and understanding of ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig's disease) under the banner ‘One try one life—Road to end ALS’. It is due to run on 21 June, which marks World ALS Day. 

The End ALS Association is soliciting donations of advertising space to run the commercial, the production of which was crowd-funded through JapanGiving, a fundraising platform. Three hundred contributors pledged close to ¥4 million (US$32,000) to the cause. Interested parties can contact McCann Worldgroup representative Miyoko Ohki.

In addition to Fujita, the commercial will feature the Japanese recording artist AI, who is a friend of Fujita’s and a supporter of the cause. Fujita continues to work despite having lost his voice due to a tracheotomy. 

The Japanese government defines ALS as “intractable”, and the ‘One try one life’ project’s ultimate aim is to eradicate the disease by working to establish effective treatment and calling for change in the Japanese government’s medical care policy. Japan has more than 9,300 ALS patients, and spreading understanding is critical given that public knowledge remains at a surface level despite global initiatives such as last year’s ‘Ice bucket challenge’.

According to a statement on behalf of End ALS from McCann, while the Ice bucket challenge received widespread attention, “we cannot say it has deepened understanding of the disease”. It cites a survey by NHK that found 60 per cent of respondents knew about the challenge itself, but only 22 per cent had any significant understanding of ALS. A quarter admitted they know nothing about it at all, while 53 per cent were aware only of the name.

International clinical trials of ALS treatments appear to be improving, but sufferers in Japan have limited access to information such as how to receive treatment, the cost involved and whom to speak to for advice.

“In this internet age, if we can spread deeper understanding of ALS, then maybe we can gather knowledge and know-how from various people all over the world, such as scientists engaged in the latest research, medical professionals and political leaders,” Fujita said in the statement.

“Moreover, these activities may serve to provide hints to solve the challenges faced not just by ALS patients, but patients suffering from many other intractable diseases.”

ALS is characterised by the gradual weakening of muscles including limbs, throat, tongue and those required for breathing. Sensation and cognitive function are not usually affected, but in most cases eye movement becomes the sole means of communication. The  exact cause of the disease is unknown.