Shanghai Pearl Tower goes red to highlight rare illnesses

Jiang Xiaowei / SHINE

The landmark Oriental Pearl Tower was lit up in red on Friday night to mark the global day for motor-neurone diseases, which affect millions of lives around the world.

The annual day for MND and Amyotrophic Lateral Sclerosis (Lou Gehrig's disease), which are both incurable, was held for the 15th time in Shanghai on Friday.

The event traditionally includes a gathering of local patients and the opening of a three-day summer camp. This year’s event was supported by government and industry.

It’s estimated that there are about 4.5 million such patients in China -- 50,000 in Shanghai.

Zhu Changqing, founder of the Neuro-Muscular Disease Association of China, said ALS/MND patients and their families in China have had some encouraging news lately.

Nusinersen, the first medicine approved to treat children and adults with spinal muscular atrophy, was released in China this year, which Zhu called a milestone.

Also, Rilutek, a medicine to treat people with ALS, has recently been covered by medical insurance in Shanghai, which helps drive down treatment costs.

To relieve the economic burden on families of patients, the association started a charity campaign in December last year to raise 300,000 yuan (US$43,600) from the public to offer 500 yuan to help 50 impoverished patients.

Zhu said so far about 50,000 yuan has been raised from over 600 people, which covers two months of care for the 50 families.

“We will continue to push for the government to offer allowances for nursing and care for patients, and also to call for more accessible facilities in elementary and middle schools and universities for ALS/NMD patients and people with special needs,” Zhu said.

Relatives of muscular dystrophy patients can contact the Shanghai Charity Foundation for free genetic tests, Zhu said.