Crisis comms – responding to a fundraising boost

A crisis comms situation doesn’t have to be as a result of an actual crisis. The same call to arms and comms skills need to be used when a story unexpectedly blows up. Knowing how and when to respond can be tricky.

This week, a Twitter thread generated a surge in donations to Epilepsy Society. Here Communications Manager Nicola Swanborough explains how an existing relationship with the family meant they were able to respond quickly and with sensitivity.

Amelia’s story

Hari's tweet: "I inherited a desk and drawers in my new job but didn’t have the key until today. When I opened it the stuff from the previous person was still inside it. Shuffling through I stumbled across the order of service for a 21yo girl, Amelia."

On Friday, Hari Miller found an order of service in her office drawer and used Twitter to share the moving story of Amelia Roberts who died at the age of 21 in 2018. In just five days, over £38k has been donated to Epilepsy Society in response.

The thread is beautifully written. It includes images of Amelia and insights into who she was as well as about her type of epilepsy which lead to her sudden death (SUDEP) at home. The sixth tweet is a link to the JustGiving page set up by her family which had then raised £80k and later, a link to how to join the Brain and Tissue Bank.

Today (Tuesday), the JustGiving total stands at almost £118k from 3400 donors. The first tweet in the thread has had more than 31k likes and 8k RTs and been replied to over 600 times. Hari and Amelia’s family have appeared on BBC Breakfast and ITV News.

The team at Epilepsy Society already had a relationship with Amelia’s family. They shared Amelia’s story and have set up a fund in Amelia’s name. But they weren’t prepared for the story to reach a new audience one year after Amelia’s death.

How to respond?

How should an organisation respond when someone’s personal story goes viral and becomes globally owned? In this case, it is Hari and Amelia’s story, not the story of an epilepsy charity.

But people are donating to Epilepsy Society because they have been moved by the story and want to do something to help. The organisation needs to be involved. They need to share their thanks, say what the money will do and use the exposure to raise awareness about epilepsy. It can be a sensitive call.

What Epilepsy Society did

Communications Manager Nicola Swanborough from Epilepsy Society explains what happened: “We first noticed that something was happening on Friday. We retweeted Hari’s thread and kept an eye on the JustGiving site. By the end of Friday, £5000 had been donated.

“We only have a small team but they pulled out all the stops to work over the weekend. They met Amelia’s family and made contact with Hari who posted the tweet.

“On Saturday when the scale of the response was still growing, we retweeted it again with a comment sharing our gratitude and thanks to everyone donating and sharing the story. Our CEO tweeted thanks too.

ES's response tweet: "This is a truly amazing and we are so grateful to Hari and all the wonderful people who have been touched by the tragic  loss of Amelia. Every donation will help us to understand more about SUDEP and how we can stop other young people losing their lives. Our heart felt thanks "

“We were very much aware that this was Hari and Amelia’s family’s story. There was a lot of media interest, particularly from the broadcasting media. We offered background support and a statement and issued a press release over the weekend.

“We also published a news story and reinstated Amelia’s story as our main homepage story. We needed to point people to somewhere they could find out more about her story and purpose of the fund.

Amelia's story is on the Epilepsy Society homepage

“The scale of the response has been exceptional. We have been trying to respond to individual messages from donors.

“We have shared our page about SUDEP as lots of people are talking about it. We know that the Roberts family are very keen to raise awareness of epilepsy, SUDEP and our research, so we are maximising opportunities for positive engagement.

“The story jumped from Twitter to Facebook early on so we have been using all our social media channels to respond to the story. We have kept our staff up-to-date through internal communications as we know that not everyone uses social media. We are planning to post a short video from our researchers thanking everyone for their support. We feel it is important for those who donated to hear about the difference their money will make.

“When it slows down we will review the way the story evolved and our response. We are very aware that we were lucky to already have a strong relationship with Amelia’s family which very much helped in ensuring that everyone was happy with public and media interest. This was a wonderfully positive, global response to a very sad story but throughout we were conscious that it is just a year since Amelia died and that this was also a very tough and personal time for her family.

“Throughout we have been grateful to them for their generosity and determination in sharing Amelia’s story in the hopes that it could save the lives of other young people in the future.

“We have a robust crisis comms plan in place at Epilepsy Society, but we could not have planned for anything on this scale.”

More about crisis comms

More about this story

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