Nicola Swanborough, acting head of external affairs, Epilepsy Society Visit the CharityComms website 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

1. Nicola Swanborough
Acting Head of External Affairs
Crisis communications isn’t
always about the negative

2. Hari and the office 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 that went 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
•31k likes
•8k retweets
•600 replies

5. Our response
We were very 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 about SUDEP
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 team says 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
A total reach of
• More than 50k

9. Sharing beyond social media
Homepage takeover

10. Internal and external communications
• Email to 300 staff at our headquarters in
Buckinghamshire
• E-newsletter to 14,000 supporters

11. Total raised in five 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 our Epilepsy 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 and Hari visit
Epilepsy Society Research Centre
Meeting Professor Sanjay Sisodiya, Director of Genomics (second from left)

14. Find out more about epilepsy
research at:
www.epilepsysociety.org.uk/research

15. 10 March 2020
PR Network: Helping people share their
real-life stories with the media

16. Visit the CharityComms website 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