At this point, anyone with access to social media has heard of the ALS Ice Bucket Challenge. Just as it lost momentum in the US, it moved east to China. Here at SVG, we have been tracking the trend as it gained traction and the resulting name smearing and controversy. We believe this is a great case study from which NPOs can gain practical knowledge and insights on lessons learned.
Here are the quick hits on the rise of the trend in China:
- Point of entry to China: Lei Jun, the founder of XiaoMi Corporations in China is the first public figure to challenge others
- Xu Yong Guang, the Chairman of the Narada Foundation believes it will not only become wildly popular in China but could be a great way of increasing awareness of charitable causes.
- Xu texts Wang Yi Ou, the Director of China Doll, an organization helping those with rare diseases in China regarding the movement and its potential for increasing visibility for her organization. Xu believes so strongly in this that his team provides administrative support for China Doll as it prepares to use this Challenge as a platform to widen awareness of rare diseases.
- Wang prepares to enter the movement and contacts various locally started NPOs that specifically support those suffering from ALS. Wang states that every organization she contacted either did not respond to her invitation or declined participation.
- Wang receives no confirmation from various ALS organizations. China Doll releases a statement saying they will accept funds for the ALS Ice Bucket Challenge. They provide articles on ALS, policy advocacy, and materials on rare diseases in China.
This is where the conflict began. One week later…
- Different ALS organizations publish articles berating China Doll and Wang Yi Ou saying the funds should be going to patients with ALS and their families instead of patients with Rummo’s Disease. They accuse the organization of deceiving donors and misusing the 6 million RMB in donations even though China Doll has made it clear throughout the campaign that the majority of the funds will be used to support patients with ALS and other organizations supporting patients with rare diseases. The ALS organizations believe no funds should be given to patients with other rare diseases.
- Chairman of the Narada Foundation and a few other large public figures from the NPO sector start the first public fundraising foundation as a response to the ALS Challenge.
- China Doll releases a press release specifically stating that they received RMB8146258.19 in donations. RMB5574311.80 of the total donated will be used to support various ALS groups including direct financial support to patients with ALS and their families. On September 3rd, China Doll will begin receiving applications from various ALS NPOs who would like support from this specific fund. The rest of the donations will be used to support other rare diseases and organizations supporting those rare diseases.
Synthesizing the course of events:
- NPOs need to form a united front
- The social sector is still working hard to regain the trust of the general public after the Red Cross scandal. While the local ALS organizations eventually conceded and acknowledged that they do support China Doll and its actions, their initial criticism and scandalization of China Doll has left yet another scar in the public’s mind regarding the social sector. Many comments on online forums are proof of this distrust.
- NPOs need to work together to advocate for policy changes and a switch in the public’s perception. There are roughly 200,000 ALS patients in China with 12 small grassroots ALS groups/organizations supporting them. With those suffering from ALS being only a small fraction of the population of China, it is hard to push for policy change on a national level. If NPOs supporting rare diseases including ALS ban together, they end up supporting a subpopulation of 10 million and would then have a greater impact.
- Take advantage of free publicity
- For most, including those with influence, this was the first time they were made aware of a rare disease. Any awareness is better than a lack of awareness.
- China Doll responded well to negative publicity. Rather than quarreling with the ALS organizations that initiated a fight, they responded with professionalism and made sure the focus remained on those suffering from rare diseases and complete transparency regarding all donations and actions taken. This is key for gaining the public’s trust.
- Responses from NPOs are too slow
- The majority of the local ALS NPOs responded long after the peak of the challenge’s popularity. Though at the beginning, it was unclear whether or not the public would react positively towards the Challenge, the NPOs should have immediately taken advantage of this rare instance where the public’s attention is on ALS and charitable causes. At the very least, they could have provided information on the diseases to increase awareness.
Contributed by Sherry Chen