Ice Bucket Challenge: Paying It Forward

From July to August 2014， the Ice Bucket Challenge， a campaign advocating dumping a bucket of ice water on one’s head to promote awareness of amyotrophic lateral sclerosis （ALS） disease and encourage donations， went viral on social media throughout the world.

Within two weeks after the Ice Bucket Challenge reached China， China-Dolls Center for Rare Diseases （CCRD） received donations of more than 7.3 million yuan via its Sina Weibo （China’s version of Twitter） platform. In addition to 2 million yuan Sina Weibo and Miaopai.com pledged， CCRD received a total of 10 million yuan. The figure is nearly five times the total donations it received in 2013.

Charity Relay on Social Media

On July 29， 2014， Peter Fretes， a former Boston College baseball star who was diagnosed with the degenerative disease in 2012， founded the ALS Ice Bucket Challenge campaign after challenging a few of his friends to the icy dare.

A participant of the Ice Bucket Challenge pours a bucket of ice water on his or her head and posts the video on social media. Then， he or she can challenge three others to either do the same or make a donation to ALS patients， or both， within 24 hours. Within two weeks， the campaign swept across the United States and spread to Canada and Europe.

In the era of mobile internet， anything can spread at incredible speed across social media. Soon， the Ice Bucket Challenge landed in China. On August 17， Lei Jun， chairman of Chinese tech giant Xiaomi Inc.， accepted a challenge from Yuri Milner， CEO of Russian internet investment group DST Global， becoming China’s first high-profile participant in the challenge. After he completed it， Lei challenged Hong Kong singer and actor Andy Lau， Foxconn founder Terry Gou， and Baidu founder and CEO Robin Li.

Within the days that followed， tremendous numbers of IT entrepreneurs， celebrities， and regular folks dumped ice water on themselves， recorded the experience， and posted it online – all to raise money to fight ALS， better known as Lou Gehrig’s disease. China had never witnessed such widespread public participation in a charity drive without inspiration from a major natural disaster.

However， some criticize the Ice Bucket Challenge as only a “show” and too commercial. Xu Yongguang， chairman of Narada Foundation， explains that participation from celebrities and business elites makes the event more attractive and popular， and it’s very simple and easy to earn reputation points by participating. However， the Ice Bucket Challenge is indeed entertaining and makes charity more fun.

Beneficiary

Surprisingly， China-Dolls Center for Rare Diseases （CCRD） became the prime beneficiary of the Ice Bucket Challenge in China. “China Dolls” colloquially refers to sufferers of osteogenesis imperfect （OI）， or brittle bone disease. The founder of CCRD， Wang Yiou， is an OI sufferer. Some wonder why China’s specialized ALS organization – Wang Jia ALS Foundation – didn’t receive donations during the Ice Bucket Challenge， an event founded for ALS.

In fact， CCRD became beneficiary by accident. On August 17， after learning that Lei Jun accepted the Ice Bucket Challenge， Bei Xiaochao， Social Responsibility Supervisor of Sina Weibo， was inspired to cooperate with a charitable organization to promote public concern of rare diseases through the widespread event. He called several Chinese rare diseases organizations， and Wang Yiou was the only to answer the call. “When I received the call， I got the feeling it might be a rare opportunity to raise public awareness of rare diseases，” recalls Wang in an open letter to participants in the Ice Bucket Challenge.

On August 18， CCRD launched a donation platform on Sina Weibo. Anyone can donate to CCRD via the platform. By September 12， CCRD had received donations totaling 7.5 million yuan.

In an open letter， Wang Yiou announced that CCRD would use the donations it received via the Ice Bucket Challenge to establish a special fund aiming to offer help and support to patients with rare diseases including ALS. “The event enables us to understand the needs of ALS patients，”she declares. “We will join hands with the country’s ALS organizations and medical institutions to formulate solutions to help patients live their lives with dignity.”

Rare Disease Care

Despite the criticism it faces in China， particularly environmental unfriendliness and all for show， the Ice Bucket Challenge did promote public awareness of ALS， a rare disease.

Rare diseases affect only a small percentage of the population. The World Health Organization defines rare diseases as those affecting 0.65-1 out of 1，000. China has confirmed some 6，000 rare diseases， of which ALS affects about 20，000 people in the country. Rare diseases are particularly difficult to diagnose and treat. Moreover， many rare diseases are excluded from the medical insurance system. China still lacks an effective system to help those with rare diseases. “This is because public awareness of rare diseases remains insufficient. Moreover， needs of patients with different rare diseases vary， and it is hard to develop a unified system to help all of them，” explains Wang Yiou.

In this context， patients with rare diseases usually receive inadequate help. Groups infected with orphan diseases often have a poetic nickname， such as “moon-children”for albino patients and “butterfly children”for epidermolysis bullosa sufferers. Behind the beautiful names are lifetimes of suffering because most rare diseases lack effective treatment. To some extent， the Ice Bucket Challenge raised public concern about rare diseases. Along with public concern， governmental and charity organizational support is needed to develop treatment for such diseases， as well as ensuring coverage by the social security system.

“The hype of the Ice Bucket Challenge will eventually fade， but the suffering of those with rare diseases will never end，”remarks Wang Yiou. “Care and support should continue on.”