Chinese NGO discloses use of ice bucket challenge donations

JINAN - A Chinese NGO disclosed on Saturday how money raised by Chinese celebrities through the popular ice bucket challenge last year has been used to benefit treatment and support for ALS patients.

The Chinese fundraiser followed a popular campaign in the United States to raise awareness about Amyotrophic Lateral Sclerosis (ALS), a rare neurodegenerative disease that causes muscle weakness, paralysis and respiratory failure. Chinese businessmen and celebrities were challenged to pour a bucket of ice water on themselves or opt instead to donate to help those with ALS, with many choosing to do both.

The proceeds of the campaign in China, totaling more than 8 million yuan ($1.28 million), went to the China-Dolls Center for Rare Disorders (CCRD).

However, some in China questioned whether it was appropriate to donate to CCRD, a non-governmental organization focused mostly on supporting those with Osteogenesis imperfecta (OI), another rare disease characterized by bones that break easily, often with no apparent cause.

The NGO set out to clear the doubts on Saturday during its fourth national conference for people with OI by disclosing how the 8 million it received will help make a difference in the lives of ALS patients.

CCRD said 5.57 million yuan was donated specifically for ALS, and the organization has used the money to support 158 ALS patients in China and to help organizations meet the medical and social needs of ALS patients.

The rest of the 8.14 million donation has been used for NGOs that focus on counselling and other support for rare disease patients.

"By making the whole process transparent, we hope people understand that behind all the fanfare, NGOs are committed to making a difference, though not in a perfect way," said Wang Yiou, founder of the CCRD.