Donations pour in for ALS patients, viral marketing touted

Taipei, Aug. 23 (CNA) The "Ice Bucket Challenge" that spread from the United States to Taiwan recently has raised large sums of money for local amyotrophic lateral sclerosis (ALS) patients within a short period of time, with many attributing the success to the power of viral marketing. Between Aug. 17 and Aug. 21, the Taiwan Motor Neuron Disease Association -- which helps people with ALS -- received donations totaling NT$13 million (US$433,091), according to the association. That is around 43 percent of the amount of donations the association receives annually, said Liu Yen-chu, head of the association. The association receives around NT$30 million in donations per year. Liu said his association will use the money to provide better long-term care for ALS patients and improve the financial conditions of the patients' families. The Ice Bucket Challenge is a viral meme meant to raise awareness of ALS patients. Those who are challenged have the options of dousing themselves with ice water, donating US$100 to an ALS charity, or doing both. The challenge went viral on social media in mid 2014. From July 29 to Aug. 21, the ALS Association in the United States had received US$53.3 million in donations, according to the association. Many Taiwanese public figures have taken on the task and challenged more to participate. Yang Yung-hsiang, deputy CEO of Taiwan Foundation for Rare Disorders, said the challenge has raised public awareness of rare disorders in Taiwan, a big encouragement for people working in the area. People with rare disorders in Taiwan have not received enough attention and support, as their numbers are relatively few -- around 8,500, Yang said. Academic institutions lack funding to study rare diseases, said Liu Ho-chien, 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 Taiwan, and 70 percent of them have no treatment options, Yang said. Furthermore, while the National Health Insurance Administration covers some of the medical expenses of these patients, other expenses, such as those spent on care and assistance, are still a huge burden for the affected families, he added. Both Liu and Yang urged the public to provide long-term care and donations to help ALS patients and other patients with rare disorders, and not allow the ice bucket challenge to be just another Internet fad. Meanwhile, Liu said, the success of the worldwide ice bucket campaign "shows the power of viral marketing." People who participate in the event nominate their friends, families or celebrities, creating a ripple effect that is not often seen in more traditional forms of advertising such as celebrity endorsements on television, he said. Viral marketing refers to marketing techniques that prompt people to pass on a marketing message to other people, increasing the message's visibility. Chen Li-yin, founder of the Taiwan Foundation for Rare Disorders, meanwhile, said the ice bucket campaign has attracted the attention of young people because it has made a charity event "fun and trendy." The ice bucket challenge spread to Taiwan at a time when local charity groups are seeking to be more creative in their appeals for donations and resources. The Hondao Senior Citizen's Welfare Foundation, for example, made a documentary titled "Go Grandriders" in 2012 that tells the true story of 17 senior citizens with an average age of 81, who embark on a motorcycle journey around Taiwan to fulfill their dream of seeing every part of the country, which changed society's stereotypes about senior citizens. More and more charity groups are also holding road runs, walking and biking events, as these activities have become increasingly popular in Taiwan. A walking event, for example, was held in May this year to raise awareness about breast cancer. (By Lung Pei-ning, Chen Ching-fang and Christie Chen)