Local group raises awareness of ALS/MND

The Neuro-Muscular Disease Association of China gathers patients, medical experts, donors, charity organizations and volunteers to mark day of recognition.

Free genetic testing is being offered again this year for people with family history of muscular dystrophy, the Neuro-Muscular Disease Association of China (MDA China) said yesterday.

In the past two years, about 20 families have taken genetic tests, which are part of a program held in cooperation with Shanghai Children’s Hospital and the Beijing Genomics Institute.

June 21 is a global day of recognition of ALS/MND, an inherited genetic muscular disorder  for which there is currently no cure.

For the 12th year in row, the Shanghai-based MDA China, marked the observance by gathering patients, medical experts, donors, charity organizations and volunteers to raise awareness of the disease. 

This year, the theme of the celebration was “Defreezing It with Love”, as ALS patients in China are popularly known as “people who gradually freeze.”

Simon Lingenau, a German expat in Shanghai who works in the herbal medicine industry, took part as a volunteer at the event on an invitation of a friend.

“It’s a good cause, and I would love to do volunteer work for them again in the future if I’m summoned,” he said.

Together with about 10 Chinese attendees at the event, Lingenau broke a small iceberg with a hammer, a little ceremony that echoed with the theme of the celebration.

It’s estimated that there are about 4.5 million patients with the disease in China, and 50,000 of them live in Shanghai.

Chen Huizhi / SHINE

Volunteer Simon Lingenau breaks a piece of ice with Chinese guests an event meant to raise awareness for ALS/MND.

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