The huge potential of the ice bucket challenge first dawned on the chief executive of the MND Association, one of the main beneficiaries of this extraordinary viral fundraising initiative, on the eve of last year's August bank holiday weekend.
Sally Light was sitting in a restaurant in Lancashire, having just left a meeting of the charity's South Lancashire branch. "Like you do when you're on your own in a restaurant, I was checking my emails," she recalls. "The ice bucket challenge had just started, but we didn't think it was going to gather much momentum."
But in the time it took her to finish her meal, donations on a JustGiving page set up by two MND Association supporters to capitalise on any ice bucket challenge funds that might come the charity's way had increased to £33,000. Light emailed the charity's finance director, Linda Cherrington, to share the good news. The email read: "The amount has gone up £3k while I have been eating my dinner. Unbelievable!"
The MND Association is the only charity that funds research, care services and campaigns for people with motor neurone disease in England, Wales and Northern Ireland, but before the ice bucket challenge many people had never heard of it. The challenge involved people tipping pails of freezing water, preferably with lots of ice, over their heads and then asking three friends to do the same and/or make donations to charity. It went on to raise £7m for the MND Association from almost a million people.
The amount raised is equivalent to half the charity's annual income for 2013, when its donor base was about 160,000 people. This windfall – and the associated publicity – was such a turning point that Light says she plans to laminate the email she sent to Cherrington and frame it. "It was extraordinary," she says.
But was the success the charity achieved the result of luck or smart fundraising? "It was the combination of smart fundraising and massive support from our volunteers and members," says Light. "Obviously, it was a fortunate windfall event that happened to us, but we worked our socks off to make the most of it, with people working all hours, seven days a week." She says the charity did not hire any new staff immediately after the challenge, but it has increased its headcount from 140 to 160 over the past two years.
Light says the impact of the ice bucket challenge went beyond the money raised. "One young woman I know who has MND and is now in a wheelchair told me that she used to spend 15 minutes telling a new person she met what MND was," she says. "She never has to do that now. It's given a sense of hope and optimism to people who didn't have it before. It's changed awareness of MND and made people feel differently about it."
Asked whether the charity managed to convert many of the people who donated during the craze into regular givers, she says this is a work in progress. "We're not just asking people if they'd like to donate to us," she says. "We've also asked them if they are interested in volunteering and if they would sign our charter." She says the charity collected 2,000 signatures from ice bucket challenge participants for this charter - a petition to the government to improve standards of care for people who have MND.
The MND Association was one of several charities that benefited significantly from the ice bucket challenge. The charity's US counterpart, ALS, was the biggest beneficiary, raising more than £78m. Macmillan Cancer Support, the other UK charity to benefit, raised £4.5m. The fact that more than one charity raised money this way caused controversy at the time, with members of the public and the charity sector accusing Macmillan of trying to capitalise unfairly on the fundraising idea of the lesser-known charity.
But Light says she spoke by phone to Macmillan's management at the peak of the challenge – a three-week period in August and September 2014 – and there was no conflict between the two charities. "I was clear with both staff and volunteers that we needed to focus on the fact that this was a once-in-a-lifetime opportunity," she says. "There was no reason to get sidetracked about whether people wanted to support other charities."
Macmillan told Third Sector at the time that the ice bucket challenge was started by cancer charity supporters in New Zealand. But Light's view is that the initiative was created by a person with the disease in the US.
Allocation of money
Earlier this year, once the craze had died down, the MND Association set out how it planned to spend its share of the money. It would allocate at least £5m to research, it said, £1.5m to care and support services, £750,000 to campaigning and raising awareness and at least £1m to emerging projects and volunteering. The charity has 3,000 volunteers; when Light became chief executive, she says, she promised herself she would meet each of the association's 84 volunteer-led branches and groups within two years. "I've managed 79, so I'm nearly there," she says.
The charity drew up the spending plan after consulting its members, who are mostly people living with MND and health and social care professionals. About 2,000 people responded; the majority said the money should be spent on research. Light says this tallied with her own instincts.
"Our vision is a world free of MND, and that's only going to come about through research," she says. "The ice bucket money is also a one-off, so we need to spend it on things that are non-recurrent. Research can take three or four years - you don't need an ongoing financial commitment for it."
Light says she was drawn to the MND Association because she enjoys working with communities suffering from injustice or neglect. Most of her previous jobs revolved around such communities, she says. She began her career as a clinical nurse in the socially deprived area of Beswick in Manchester. Later, after completing the NHS fast-track management training scheme in 1995, she took on various roles and in 2002 became a hospital director in Barnsley, a South Yorkshire town with one of the highest child mortality rates in western Europe. She also worked with the aboriginal community in Vancouver, Canada, after being appointed to the city's health authority in 2006 to help improve its services.
In 2010, she returned to the UK to become the director of rehabilitation at the Royal Hospital for Neuro-disability, a London-based charity for people with severe brain injuries, who she says are often neglected by the NHS.
The MND Association job came up in 2012. "What grabbed me about it was the sense that this was a fight that still needed a lot of energy and perhaps required someone who knew their way around the NHS," she says. "People with MND get a pretty raw deal out of the system - not because the system isn't sympathetic to them, but because the NHS struggles to respond to a fast-progressing disease like MND."
It was this desire to fight on behalf of the MND community that led the charity to focus more on campaigning under Light's watch. "Campaigning and awareness-raising are a growing part of what we do, partly because it can be terribly isolating when you've got a rare disease such as MND," she says. "We make no excuse for being honest with the general public and decision-makers about the situation for people with MND, and for pointing out where it needs to change."
One change that needs to happen, Light believes, is an improvement in NHS diagnosis rates. It often takes up to a year for someone to be diagnosed with MND, she says, by which time the disease can be too advanced to be treated effectively. Thirty per cent of people with MND die within a year of diagnosis, and 50 per cent within two years.
Light says that her 23-year career in the NHS has made her realistic about how much the charity's campaigns can achieve. She says she is also aware that NHS professionals have their patients' best interests at heart - so if they appear not to be doing the best thing for them, that is probably because they don't know what that is. It is the MND Association's job to tell them, she says.
Films and TV collaborations
The charity has also collaborated on a number of films and television programmes in the past few months. The best known of these is The Theory of Everything, a film about the life of the astrophysicist Stephen Hawking, who has lived with MND for more than 50 years.
Light says the actors Eddie Redmayne and Felicity Jones, who play Hawking and his ex-wife Jane respectively, worked extensively with the MND Association to help them prepare for their roles. She says: "We put Eddie in contact with people with MND to help him understand how the disease affects people – for example, how the muscular deterioration of the hands affects their ability to hold a pen."
The result was, Light says, an exceptional portrayal, not only of Hawking, but also of the pressures experienced by carers and families of people with MND. She says that Redmayne and Jones – and Benedict Cumberbatch, who played the title role in the 2004 film Hawking – have all said they will continue to support the charity, although it is not yet clear what form that backing will take.
The MND Association also helped to develop plotlines for the BBC medical drama Casualty and the Channel 4 soap opera Hollyoaks, which have both featured characters with MND in recent months. "Having got the level of awareness we achieved during the ice bucket challenge, we want to ensure that we don't then drop off," says Light. She is unsure whether the media interest in MND has been generated by the ice-bucket phenomenon or whether it was a coincidence, but her communications manager intervenes at this point. "No, it will have been the former," she tells her boss. "We're sexy with a young audience now."
Whatever the appeal, maintaining the momentum of the current wave of interest is one of Light's main priorities. She acknowledges that the charity might be perceived as becoming larger than it needs to be over the past nine months. "There are only 5,000 people living with MND, and lots of organisations representing conditions with a similar prevalence are much smaller than us," she says. But other charities should know that their moment in the limelight might be closer than they think, she says: "We were smaller once, and I hope that our story of growth and success provides inspiration and encouragement to other organisations. There's every reason to think they can operate on the same sized platform as we have, and can be just as successful."