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20 January 2020

How a tweet went viral raising thousands for epilepsy research

On Friday, a young woman, Hari Miller, tweeted a post about an order of service she had discovered in her desk drawer.

Hari had started a new job, and it was only once she had been given the keys to her desk that she found the service order for 21-year-old Amelia Roberts, who had died of Sudden Unexpected Death in Epilepsy.

The beautiful picture of Amelia and the moving words of her parents Hamish and Debbie Roberts, touched Hari and she decided to share it on Twitter, knowing that her friends would be moved by Amelia’s story. She also messaged Amelia’s family to make a donation to her JustGiving page.

Twenty-four hours later, Hari’s post had gone viral, with likes, retweets and donations flooding in from around the world.

By Monday morning, Amelia’s fund had climbed from £80,000 to more than £114,000. With offline donations, the fund now sits at over £140,000.

You can read the full thread on Twitter.

Global generosity

At Epilepsy Society, we have been amazed and humbled by the generosity of people from across the globe. Some donations have come from people with their own personal experience of epilepsy. But most are from those who had little or no knowledge of the condition. Just an instant connection and empathy with Hari’s tweet and the tragic story she had discovered in her desk drawer.

Minute by minute, donations have come pouring in, many of them anonymous, but all of them a testimony to the underlying goodness of humanity that often gets overlooked on social media.

You can donate to Amelia’s JustGiving page here.

Every penny donated to Amelia’s fund will go towards research into epilepsy and helping to understand how our genes can contribute to epilepsy. The money will fund a bioinformatician for two years and this is a vital post for interpreting the data from people’s DNA.

Watch Debbie and Hamish Roberts and Hari  talking about Amelia on BBC Breakfast. Scroll to 2:20

Incredible weekend

Claire Glazebrook, Director of Fundraising at Epilepsy Society said: “This has been an incredible weekend in raising awareness of epilepsy and raising important funds that will help us to gain a greater understanding of the condition.

“Hari had no idea that her tweet would go viral. She could not have foreseen the amazing impact that it would have on people globally or that it would result in thousands of pounds of donations into potentially life changing research.

“This is such a wonderful testimony for Amelia and all her family. It is just a year since the young student died and it is quite incredible to think that her fund could literally save the lives of others like her in the future. Our heartfelt thanks to Hari, to Amelia’s family and of course to everyone around the world who has donated. We are truly grateful.”

Epilepsy society thanks everyone who has donated to Amelia's fund

Find out more

Read more about Amelia's story.  

Hamish Roberts talks about “A father’s grief” in our members’ magazine Epilepsy Review

Find out more about the research that Amelia’s JustGiving page is helping to fund.