Melting hearts

Faced with such a debilitating illness, many patients in China lack the strength to fight back, especially as until recently ALS was little known in the country.

In the West, ALS has been known for many years. In addition to Gehrig, the baseball player, the global fame of Hawking and the Ice Bucket Challenge in 2014 also helped to raise awareness globally.

The past decade has seen improvements in China, with greater social awareness and improved healthcare, according to Zhang Yanling, head of the Chinese Medical Doctor Association.

In 2005, the association established a charity program called "Melting the Frozen Heart", which aims to improve the quality of life of ALS patients and raise awareness.

"A support system, involving people from different sectors of society, has taken shape during 13 years of effort," Zhang said.

About 100 neurological experts from 20 hospitals are voluntarily engaged in patient consultation and educating people about the illness.

Zhang added that the association has received donations totaling more 60 million yuan ($9.5 million) from businesses such as pharmaceutical companies, respirator manufacturers and makers of eye-tracking equipment that allows patients to read computer screens.

"Media exposure has also greatly raised public awareness," he said.

"Reporters use their pens and cameras to convey patients' needs and their touching stories," he said.

"The most important part is the patients and their families who struggle a lot to fight this rare disease, impressing us and teaching us a lot.

Wang Zhenhua, director of the program, said ALS is becoming better known in China.

"When I searched for information about the illness on a Chinese search engine in 2005, there were fewer than 10,000 results, but now there are more than 5 million, so public awareness has certainly been raised," he said.

"Last year, medication for ALS was included in the national medical insurance program as part of improvements in the conditions for drug use for rare diseases," he added.

"However, more efforts still need to be made to help patients receive timely treatment, understand the disease in a scientific way and live dignified lives. We hope greater efforts will help us to melt more frozen hearts."