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August 28, 2014

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Throwing ice bucket is worth the gimmickry

WHEN an acquaintance of mine asked me to join his wife to take the ice bucket challenge for ALS, I wondered what it was and what ALS stood for.

He later shared pictures of the event on WeChat. I still had no idea about what was going to happen on the Bund that day, only to find a little girl on his shoulder who poured a bucket of icy water on his wife. But now I’m quite familiar with the ongoing challenge as well as the terrible disease with no boundaries, thanks to widespread videos of celebrities who joined the charity event and braved the downpour.

Fashion icon

It cannot be denied that the fund-raising campaign has become a fashion icon and hit headlines worldwide since more and more people, many of them bigshots, uploaded their bucket shower to the Internet.

Differing views have developed over the viral movement that initiated from American high, and high-profile performers have soaked themselves in various ways, some quite humorous. Retired Los Angeles Lakers center Shaquille O’Neal, standing 2.16 meters tall and weighing around 150 kilograms, emptied a tiny glass with a drop on his head. Chinese actor Wang Baoqiang posed as an ancient man who was watched by a dozen qipao-wearing beauties in a 19-century scene when he took the icy shower.

But many say it’s become a silly game and is overhyped. They say it’s time to pay real attention to patients with the rare amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease.”

The progressive neurodegenerative disease affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body.

The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

It’s clear that the widely popular ice bucket challenge has raised an impressive amount of money and awareness of motor neuron diseases.

The ALS Association pocketed more than US$80 million in a month. Because of the joint endeavor of so many politicians, entrepreneurs, artists and ordinary people, ALS is one of the hottest topics right now. Such a phenomenon hasn’t been seen in recent memory.

Criticism

Some might criticize the gimmick as something akin to the wrangling guest who robs the place of the host. That’s because people might pay more attention to performances by celebrities like Sarah Palin or Leonardo DiCaprio than to the disease itself. But in my eyes, it was burlesque that successfully attracted public attention to the incurable disease, bringing it to the attention of many of us for the first time.

Perhaps most of the performances are full of laughter while many ALS patients are struggling to survive. But that’s the way life is, and we have to accept it if there is not a cure or treatment. When life gives you lemons, make lemonade.

The good news is that although the cause of ALS is not completely understood, research has brought a wealth of new understanding about the physiology of this disease. There are now significant devices and therapies that can manage the symptoms of ALS to help people maintain as much independence as possible.

For the sake of more breakthroughs, the ice bucket challenge is successful.

The activity may also arouse awareness of the public to other rare diseases, of which ALS is just one among them.




 

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