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Crisis communications isn't always about the negative
Hari shared a heartfelt post on Twitter after discovering an order of service for 21-year-old Amelia, who died from sudden unexpected death in epilepsy (SUDEP), which went viral and led to significant fundraising for epilepsy research. Over five days, £40,000 was raised, contributing to a total of £120,000 designated for studying SUDEP, along with a message of appreciation to those involved. The document also highlights ongoing efforts to educate the public about SUDEP and encourage brain donations for research.
Crisis communications isn't always about the negative
- 1. Nicola Swanborough Acting Headof External Affairs Crisis communications isn’t always about the negative
- 2. Hari and theoffice drawers Hari found an order of service for 21- year-old Amelia in her office desk drawer. Amelia had lost her life to Sudden Unexpected Death in Epilepsy
- 3. Hari’s tweet thatwent viral After making a donation to a fund set up for Amelia justgiving.com/fundraising/deb bieroberts21, and after speaking to Amelia’s parents, Hari post the order of service on Twitter. The post went viral.
- 4. Hari’s first tweet •31klikes •8k retweets •600 replies
- 5. Our response We werevery anxious to show our appreciation to Hari and everyone who was tweeting and donating. We also wanted to show how funds raised would help to prevent other young people from losing their lives to epilepsy, as Amelia had.
- 6. Sharing information aboutSUDEP Around 1,000 people die from epilepsy related causes in the UK every year. 600 of those deaths are as a result of SUDEP - Sudden Unexpected Death in Epilepsy. It can be quite frightening for someone with epilepsy to learn about SUDEP for the first time through social media. We wanted to make sure people who were worried could access information about SUDEP in the right context.
- 7. Our research teamsays thanks We made a short video from our Director of Genomics, Professor Sanjay Sisodiya and his team, thanking everyone who had donated to Amelia’s fund and explaining how their money would help to push forward research into SUDEP and potentially save lives.
- 8. Our five tweets Atotal reach of • More than 50k
- 9. Sharing beyond socialmedia Homepage takeover
- 10. Internal and externalcommunications • Email to 300 staff at our headquarters in Buckinghamshire • E-newsletter to 14,000 supporters
- 11. Total raised infive days • £40k Bringing the total to over • £120,00 Enough to fund a bioinformatician for two years. This post is essential for analysing data from genomic sequencing, leading us to a better understanding of the causes of SUDEP (Sudden Unexpected Death in Epilepsy).
- 12. Enquiries to ourEpilepsy Society Brain and Tissue Bank •170 enquiries from people wishing to donate their brains at the end of their lives •27 people completing their brain donation registration form … and more enquiries and registrations continue to flood in.
- 13. Amelia’s parents andHari visit Epilepsy Society Research Centre Meeting Professor Sanjay Sisodiya, Director of Genomics (second from left)
- 14. Find out moreabout epilepsy research at: www.epilepsysociety.org.uk/research
- 15. 10 March 2020 PRNetwork: Helping people share their real-life stories with the media
- 16. Visit the CharityCommswebsite to view slides from past events, see what events we have coming up and to check out what else we do: www.charitycomms.org.uk