Maximising the hype and being flexible were key to the Motor Neurone Disease Association raising £7.1m from this summer’s ice bucket challenge, the charity’s finance director has said.

Linda Cherrington, director of finance and operations at the MND Association, was speaking at the ICAEW charity and voluntary sector group’s annual conference in London yesterday.
 
She said the charity, which was set up in 1979 by people affected by MND, has gained 85,000 new supporters’ details from the 900,000 donations it received during the viral, supporter-led fundraising phenomenon.

It has 533 new direct debits and is recruiting staff so it is able to continue growing its supporter base through thanks and following up with those who donated through the challenge.

The MND Association is enjoying being known among the general public, the increased awareness of the disease, new interest from corporate partners and working out how to spend its windfall, Cherrington said. For the first time, the charity has had to buy more places in the London Marathon.

A survey has been put up on the charity’s website to canvas supporters and volunteers about how it should spend the money raised.

Cherrington said: “We’ve had some great suggestions, like creating a holiday home, but overwhelmingly the message is that we find a cure. People want an end to it rather than anything short-term.”

The charity had to change its plans for its September campaign, which had been aimed at raising £40,000 for research. Instead, it wanted to make sure people made the connection between the ice bucket challenge and its cause.

Press ads thanking people for their support and featuring someone living with MND under the strapline ‘I am the human face of the ice bucket challenge’ were created. Cherrington said the aim was to make people associate the challenge with something tangible.

When the challenge started, reportedly by the former baseball player Pete Frates, a Bostonian who lives with ALS, a form of MND, it quickly spread via social media in the US, with money donated to the ALS Association.

Cherrington said two volunteers at the MND Association’s West Yorkshire branch spotted the campaign and were early adopters in the UK, setting up a JustGiving page with an initial target of £500.

The charity’s HQ took on the fundraising page and promoted it nationally via Twitter and Facebook.  This soon attracted the support of high-profile ice bucket challengers, memorably Benedict Cumberbatch, whose YouTube video for the charity has now been viewed more than five million times.

“We were never going to take credit for it, we just made sure we fanned the flames,” Cherrington said. “We used Twitter and we made sure we were maximising whatever activity we could.

“We were flexible and empowered staff to take decisions. We knew it would be short-lived and we had to make the most of it.

“We were reacting to a lightning strike - no-one could have predicted it or controlled it.”

Over the August bank holiday weekend the charity saw its fundraising total jump from £60,000 to £1m. Requests for media interviews were pouring in and the charity had an unprecedented opportunity to promote its cause.

Open and honest

But Cherrington said: “It can turn really quite quickly.” And soon the media frenzy turned negative.

The charity faced criticism about its research from animal rights activists and those against stem cell research, she said.

Questions were raised about how much money would go to its core activities funding research.

“We were open and honest from the beginning; if you are you’ve given them everything there is and there is nothing left to uncover,” Cherrington said. “We directed enquiries about our spending to our annual accounts. We spend 70p in every pound on our core activities.”

The Times ran an article about Macmillan “taking money” from the MND Association by claiming the campaign. Cherrington said the MND Association remained neutral and took the position that donors could choose to donate to whatever cause they wanted.

In the States, the ALS Association faced a huge backlash when they wanted to trademark the challenge.

“The more money in the sector the better,” Cherrington said. “We have not started it so why should we have all the benefit?”