Ice bucket challenge tally nears $100m

The ALS Ice Bucket Challenge has raised a staggering $94.3 million for the motor neurone disease (MND) charity behind the initiative, but has left it wondering where to spend the money.

The amount raised is more than 30 times the usual level of donations since the craze started to sweep Facebook and Twitter (#ALSIceBucketChallenge) at the end of July, leaving the ALS Association admitting that it is now facing “tremendous responsibility” to invest the windfall wisely.

The Ice Bucket Challenge is designed to raise awareness and funding for amyotrophic lateral sclerosis (ALS), known in the UK as MND, and involves people dumping a bucket of ice onto their heads, posting the video on Facebook and nominating three others to do the same.

After being challenged, the nominee has 24 hours to do likewise, or can take the option of making a $100 donation to the charity. The power of social media meant the project soon went viral – with celebrities such as David Beckham, Lady Gaga, Justin Bieber and Dolly Parton joining an estimated million people in doing the challenge.

Charlie Sheen sidestepped a cold shower by filling his ice bucket with $10,000 in cash, while Patrick Stewart was filmed writing a cheque for the charity before plucking a couple of cubes from the bucket to add to a glass of whiskey.

ALS – a form of MND – is a progressive disease that attacks the motor neurones in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.

ALS Association chief executive Barbara Newhouse said yesterday that the charity is “absolutely committed to transparency and will be communicating regularly with the ALS community, our donors, the media and the public about progress to invest these dollars … in areas that will have maximum impact on the fight against this devastating disease.”

Pharma companies have also joined in, with researchers and executives from GlaxoSmithKline, ISIS Pharmaceuticals, Merck & Co, Evotec, Biogen Idec and Pfizer among those taking the plunge.

Pharma’s efforts to develop treatments for ALS have been disappointing however, with only one drug on the market – Sanofi’s Rilutek (riluzone) – which was launched in the 1990s.

Last year, Biogen Idec’s halted development of its dexpramipexole candidate after disappointing Phase III trials, joining a string of other failed projects, with only a handful of ongoing therapeutic trials listed on the clinicaltrials.gov registry.

Among the drug candidates being tested in ALS are Novartis’ multiple sclerosis drug Gilenya (fingolimod); Teva’s Azilect (rasagiline); VM BioPharma’s DNA-based VM202; NeuroNova’s sNN0029 and NeuralStem’s cell therapy NSI-566.

Meanwhile, the scale of the ALS Association’s windfall has inevitably caused questions to be raised about its finances, including a $1.7m wages bill and $1.2m in travel expenses per year.

The charity issued a press release yesterday citing independent group Charity Navigator, which it says had awarded it the “highest levels of achievement with regard to financial practices.” According to Charity Navigator, only one quarter of the charitable organizations it reviews receives the four-star ranking awarded to the ALS Association.

The Motor Neurone Disease Association (MNDA) in the UK has also benefitted from the craze, raising £2 million from text message donations linked to the challenge.

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Patient perspectives: Les Halpin

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