Ice bucket challenge the next stage – how MND Association is still benefiting

The campaign, which will run throughout June, includes print, outdoor and social activity that aims to put people living with disease at the heart of the message. It is based around the message #LastSummer thanking people for “rising to the challenge”.

One poster features  Michael, who says he didn’t do the ice bucket challenge last year but five months later found out he had the diseas, which has no cure and 50% of people die within two years of diagnosis.

The campaign also thanks those who took part and donated, crediting “increased awareness and understanding”.

‘Last opportunity’

Speaking to Marketing Week, the charity’s director of external affairs, Chris James said the charity saw this campaign as its “last opportunity” to speak to an audience that may have done the ice bucket challenge last summer but didn’t know what they were doing it for.

“The nature of such events is that many people do it for fun and to enjoy the moment. Many people did the challenge but didn’t make the connection with MND Association.”

Chris James, MND Association’s director of external affairs

“The nature of such events is that many people do it for fun and to enjoy the moment. Many people did do the challenge but didn’t make that connection with MND Association. One of the purposes of this campaign is to get that message across – that the Ice Bucket Challenge was for us,” he said.

Over the course of the Ice Bucket Challenge, which was popular for “a very short period of a few weeks” according to James, MND Association raised more than £7m from 900,000 donors. James admitted the soaring interest in the charity and need to get involved in the campaign to ensure it maximised the opportunity created challenges for MND Association.

At the height of the challenge – around the August bank holiday last year – it had to bring in extra resource to deal with the rise in donations and requests to ensure it said thank you to people who donated. It was also “all hands on deck” to manage its popular Twitter feed.

“People worked through the entire bank holiday to make sure our Twitter was up to date, particularly celebrities being challenged to do the Ice Bucket Challenge was really important for us and we made sure we were tweeting them to say they had been challenged,” said James.

Maintaining engagement

Once interest died down, MND Association said it faced a real challenge to try to keep some of the people who had donated engaged with the charity. One of the big issues was that it had no idea of the demographics of those who donated – only a name and how much.

Rather than calling for more money, MND Association opted to educate people about the charity, the work it does and how it supports people with the disease. In particular it asked people to sign its charter, which sets out what people living with the disease should receive in care and treatment. It got 2,000 extra signatories.

James said MND Association has also seen an increase in volunteering and more media interest about the disease. In the wake of the campaign TV shows including Hollyoaks and Casualty have run storylines featuring motor neurone disease.

“The ice bucket challenge opened doors for us. We have a larger database now that we can go out and talk to and some have engaged further. The increase in interest is not a coincidence – this is a disease that really grabs people,” he added.

Awareness boost

MND Association also had to be careful with how it spent the extra money. James said the first thing it did was ask its members for their priorities on how the money should be spent and they said on research.

That means MND Association is pumping £5.1m into research projects over the next three to five years – including into the global genetic project Project Mine as well as a gene bank for motor neurone disease.

The charity is also investing in care and support – with the some of the funds from the ice bucket challenge going to two new specialist motor neurone disease centres that it runs alongside the NHS.

The rest of the money has been set aside for up and coming projects – what James dubbed an “opportunity fund”.

However James said the biggest thing to come out of the ice bucket challenge was the raised awareness and the feelings of hope it gave to people with the disease.

“It is hugely challenging to raise awareness with the general public on such a rare condition. The ice bucket challenge has been a huge boost. One of the areas of great frustration and sadness for sufferers is that they constantly have to explain what motor neurone disease is.

“The ice bucket challenge and the movie The Theory of Everything [which tells the story of scientist and motor neurone disease sufferer Stephen Hawking], those two events give people hope for the future and that ultimately we can find a cure,” explained James.