Public awareness of ALS, short for amyotrophic lateral sclerosis, has been growing in China since the death of British physicist Stephen Hawking last year due to the disease.

Hawking, a science icon known for his studies of the universe, was diagnosed with ALS in 1963.

ALS affects an estimated 350,000 individuals around the globe and kills more than 100,000 annually, according to the International Alliance of ALS/MND Associations.

In a video interview with China Daily app, Wang Yiou, chairman of the Illness Challenge Foundation, shared what people living with this incurable disease face.

Patients can only continue to live for a period of time via expensive medical devices such as breathing machines, Wang said.

But every experience is different. Wang also recalled one of the foundation’s patients in full details, including a poem the patient wrote.

Asked about the viral craze related to this rare disease by the "Ice Bucket Challenge" that took the world by storm in 2014, Wang called for more sustainable patient support.

"Most people still do not know what ALS is", Wang said.

"The ice bucket challenge only lasts for a while, but families of ALS patients need to care for them for a lifetime," she added.

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