Sun, Aug 24, 2014 - Page 3 News List

‘Ice Bucket’ gives ALS group boost

Staff writer, with CNA

The Ice Bucket Challenge that recently spread from the US to Taiwan has raised large sums of money for local amyotrophic lateral sclerosis (ALS) patients within a short period of time, with many attributing the campaign’s success to the power of viral marketing.

Between last Sunday and Thursday, the Taiwan Motor Neuron Disease Association received a total of NT$13 million (US$433,091) in donations, it said.

That is about 43 percent of the about NT$30 million that the association typically receives in donations over an entire year, association head Liu Yen-chu (劉延鉅) said.

Liu said the association will use the money to provide better long-term care for people with ALS — also known as Lou Gehrig’s disease — and improve the financial conditions of the patients’ families.

The Ice Bucket Challenge went viral on social media in the middle of the year, and from July 29 to Sunday last week, the US-based ALS Association received US$53.3 million in donations, it has said.

Many Taiwanese public figures have taken on the task, which involves pouring ice water over the head or donating money — or both — and challenged more to participate.

Taiwan Foundation for Rare Disorders deputy chief executive Yang Yung-Shiang (楊永祥) said the challenge has raised public awareness of rare disorders in the nation and has been a big encouragement for people working in that sector.

Local academic institutions lack funding to study rare diseases, said Liu Ho-chien (劉和謙), CEO of the Spinal Cord Injury Foundation and former secretary-general of the Taiwan Spinocerebellar Ataxia Association.

There are 201 diseases classified as rare in the nation, 70 percent of which are not treatable, Yang said.

While the National Health Insurance Administration covers some of these patients’ medical needs, other costs, such as for care and assistance, are still a huge burden for the patients’ families, he added.

Liu and Yang urged the public to continue donating to and helping raise awareness of patients with rare disorders, and not allow the Ice Bucket Challenge to be just another Internet fad.

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