From headlines to Hollyoaks

the fundraiser image

From headlines to Hollyoaks

From headlines to Hollyoaks

Why the Ice Bucket Challenge has been a comms game-changer for the Motor Neurone Disease Association, and is still delivering opportunities today


Unless you were living under a rock in August 2014 you will have heard of the ALS/MND Ice Bucket Challenge. Anyone under that rock can catch up on Wikipedia, which is surprisingly accurate both on the USA origins and how dumping a bucket of cold water on your head and filming it could make such a difference to a relatively rare terminal disease.


In just three weeks the Motor Neurone Disease (MND) Association, which represents people affected by MND in England, Wales and Northern Ireland received more than £7m from soggy donors. Globally, across all of the different MND charities around the world, the figure was more like $115m. There are lots of theories, dissertations even by now, about why it worked but for me it is simple; it was led ‘by the people’ and not something dreamed up by a creative agency.


That it worked is undeniable in cold hard cash. But for me and my communications team, awareness is priceless too and this visual, which globally geotagged tweets that mentioned #IceBucketChallenge, shows the dramatic snowball of the craze.


Two years on, the Ice Bucket Challenge is still making headlines.


Recently, research fuelled by the craze has started to provide more knowledge and comment in the national media. But it is the wider opportunities since 2014 that have been a game changer for a complex and relatively rare condition that isn’t inherently easy to ‘PR’ for several reasons. Known as ALS (Amyotrophic lateral sclerosis) in the States and motor neurone disease or MND in the UK, it’s a complicated and devastating disease that kills around six people in the UK every day.


Actually, ALS is just one type of MND (I said it was complicated), but some things are simple: there is no effective treatment and it’s fatal, often brutally quickly. More than 50% of people die within two years of diagnosis. Being involved in the Ice Bucket Challenge from a comms perspective at the time was crazy. There was little time to strategise, with the phone ringing off the hook for media comment and guests.


Since then, we have been presented with money-can’t-buy opportunities that are raising awareness and educating new audiences in new ways.


Post-Ice Bucket Challenge, people affected by MND felt less isolated; they felt like they were no longer alone as so many shared their stories on social or indeed traditional media. Today, there is an increased understanding of MND - not always perfect, but the disease is now definitely more on the radar of the general public and some of them happen to be writers, producers or commissioners.


Last month, I took a phone call from Hollyoaks.


The producers had just decided that a regular character was to have MND, and that viewers would watch the disease progression over many months. They asked if we would we like to be involved. Crumbs yes! We already had some experience of working with Casualty on script support earlier in 2014, and Hollyoaks was another incredible opportunity. By reputation Hollyoaks was known for handling sensitive topics well, and it was the start of a fantastic relationship with everyone from writers, actors and crew to publicists and set decorators.


It wasn’t always an easy ask; together with colleagues from our care and information teams we read hundreds of pages of script. We juggled and argued about the accuracy of portrayal balanced with the need to drive what was frankly at times a crazy storyline. But when the episodes started airing we knew that we were influencing a whole of generation of younger people, and not so young people, that might have done the Ice Bucket Challenge a year earlier yet still had little actual knowledge of MND. Now, they started to see a character exhibiting some of the early symptoms, eventually falling and ending up in a wheelchair. It was a money-can’t-buy opportunity to raise knowledge.


And the opportunities keep coming.


We are currently working with the daytime soap Doctors on an MND-based storyline. This time there is much more specific detail about the disease, and around the pressure on carers too. It’s a whole new audience, and we are able to make sure that the detail is spot on. It’s not just us being pedantic; already we have commented on an oxygen bottle being a prominent prop in a room. As a writer is might seem obvious that someone having difficulty in breathing would need oxygen and it’s a nice visible signpost to underline that. However, the reality is that the use of oxygen therapy can be incredibly dangerous with MND patients.


Of course script support like this is just one part of what we do. Traditional media handling and providing the right interviewee, whether a member of staff or someone with MND willing to share their personal experience (with our support), remains a vital part of the role. We organise bespoke training and refresher courses too for staff with a heavy media responsibility. It is vital that our spokespeople have the confidence to best promote the Association, and we are proud to be regularly contributors to the national news agenda; from the Today programme to BBC Breakfast, Sky News to Channel 5 news. And we are proud to still be known as the Ice Bucket charity.


Emma Johns is communications manager at the Motor Neurone Disease (MND) Association. Keep across the work of the charity on Twitter and Facebook

Get the latest fundraising advice and insight

the fundraiser cover Sign me up