Tuesday, 9 June 2015

After The Ice Bucket Challenge

It was the social media phenomenen of last summer. Facebook, Twitter and YouTube were full of videos of people dumping buckets of iced water over their heads, and then challenging their friends to do the same. Everyone was at it: pop stars, politicians, pundits. It raised the awareness of a hitherto little-known and little-understood disease into common knowledge, and raised a lot of money in the process.
It was the Ice Bucket Challenge, raising money for Motor Neurone Disease (better known in the US as ALS). And, as we come up to the first anniversary of its launch, the question is: what happened next?
Let's look into the successes of the Challenge. Over the course of a couple of months it raised $115 million for the cause, with over $11m coming in on a single night, August 20th. In the UK £7m came into the coffers. For American charity ALSA, there was a flood of donations that totalled a five-fold increase on their annual income. That kind of windfall can turn an organisation's head.
After the noise, the silence. As the cool weather set in and the prospect of upending ice water over one's head became less attractive, the donations ebbed to a more manageable level. The staff of charities like ALSA could step back, take a deep breath and figure out what to do with the money. The die-back of the campaigning and the disappearance of ALS from the public eye was a good sign. There was a lot of work to do.
The tragic thing about ALS is that there's no real cure. The best we have at the moment is a drug called Rilutek, which can allievate symptoms by a couple of months. Most charity work focusses on running clinics that help with palliative care, treating the symptoms and trying to make patient's lives comfortable as their bodies quietly fail them. But there's a huge hole in funding into research. The money from the Challenge will help, but it's a drop in the bucket compared to what's needed. Getting a successful treatment into the hands of doctors can cost billions.
70% of the money raised by the US Challenge is going directly to research, with some promising studies into stem cell therapy. There's a big question as to why Stephen Hawking, probably the best-known ALS sufferer, has survived for so long. Is there a genetic predisposition that has allowed him to keep going long after most people with the disease are gone? With money to spend, perhaps that question can finally be answered.
But that money won't last. Most of the funds earned have been allocated and spent. This summer, there will be a second Ice Bucket Challenge, helping to keep the momentum going. We can only hope that people will view the return of the event in the way it's intended, and not as an attempt to cash in on last year's fad.

There's a very good Guardian article on the Ice Bucket Challenge. You should read it.

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