/ 4 September 2014

Is there a hole in the ALS ice bucket challenge?

People take part in the viral ice bucket challenge
People take part in the viral ice bucket challenge

Over $100-million has been raised in the recent “ice bucket challenge” craze, supposedly for Amyotrophic lateral sclerosis (ALS) research, but there are suggestions that the money isn’t going where people think.

Participants nominate each other to pour a bucket of ice over themselves to raise awareness of the disease and money for ALS research.

Political Ears, a blog in the United States, reported that over 73% of all donations raised are going to fundraising, overheads, executive salaries, and external donations. “Less than 27% is actually used for the purpose [people] donated for,” the report states. 

According to the ALS Association’s tax records for the past fiscal year, president and chief executive officer Jane Gilbert earned a salary of about $339 000. Fourteen employees received more than $100 000 of “reportable compensation” from the organisation.

Fox43 reported that the ALS Association said the article by Political Ears is filled with “half-truths and misinformation” and described the salaries as being “in line with the job markets where they are located”. The association is quoted as saying that research is one of three key functions it supports, and donors can choose to direct all of their money to research.

People from all over the world have been participating, and celebrities such as Weird Al Yankovic, LeBron James, the Foo Fighters and even Kermit the Frog have taken up the freezing challenge. While it has raised awareness about ALS, some people doing the challenge instead of donating have been accused of “slacktivism” – lazy activism.

ALS is a neurodegenerative disorder – or a motor neurone disease – that results in muscle weakness and atrophy due to the degeneration of motor neurones. Affected individuals may ultimately lose the ability to initiate and control all voluntary movement.