SUDEP Action

Making every epilepsy death count
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Jane Hanna stepping down as CEO


Jane Hanna is stepping down as CEO of SUDEP Action from July 31. Jane will continue to serve the charity in a new role as Director of Policy & Influencing from the autumn. Current Deputy CEO Sammy Ashby will take over as Chief Executive of the charity from August 1.

John Hirst, Chair of SUDEP Action, paid fulsome tribute to Jane.

He said: “Jane has worked tirelessly for decades with the charity team. During the pandemic, she led the team, as funding fell dramatically, so that charity services, research and the highly specialist staff team continued to thrive. Our latest annual report shows the significant strides made in supporting people and research during times of national crisis. She, the trustees and the staff team are so thankful to all the supporters who made this possible. Jane had thought about succession and was clear that the time was right this year to take a step back. This year means she can pass on the responsibility of leadership at a time when the charity’s work is of the highest order and impact, and it will allow her and her family a better work/life balance.

There is no way that I can adequately put into words the extraordinary job Jane has done over so many years since she and four others founded the charity in 1996. She has built a remarkable reputation both in the UK and internationally in the fight for recognition and understanding of SUDEP and avoidable epilepsy mortality, and in supporting those of us who have suffered such bereavements. She leaves the job of CEO with the charity in excellent shape. We will find ways to say a much deserved thank you to Jane over the next few months and to celebrate her work and contribution."

In the meantime, if you’d like to leave a message for Jane or share a memory or photo then we would love to collect these. We invite you to share these at “

Read John’s full message here   Message from the Chair, John Hirst


Jane said: “I am really pleased that the charity is in the strongest position in 2023 and it is the right time for succession. The last few years have been challenging, but hopeful too because of the overwhelming support the charity has received.

“Against a strong body of evidence over decades we have pushed forward with our research publications and policy work on risk, working in partnership with research teams across the UK and internationally. In 2023 I was invited to lead an epilepsy coalition of clinical and patient organisations to fight for inclusion of SUDEP and other harms to people with epilepsy in UK policy on anti-seizure medications so that lives can be saved. All this while also contributing the vital learnings from individual deaths via the Epilepsy Deaths Register, the world’s largest collection of research repository of evidence from the suddenly bereaved.  

“Most importantly of all we have been able to be continuously alongside the suddenly bereaved and enable them (with our expertise and support) to advocate for improvements to help prevent future deaths.  Fundamentally, there is one common thread of learning through the decades – that what is needed is the inclusion of SUDEP and epilepsy risk and shared understandings about risk and the need for epilepsy as a poorly served community to be finally recognised as a public health inequality. The pandemic and the cost-of-living crisis have helped us give greater visibility to this learning, have strengthened our partnerships and collaborations and given the charity an opportunity to accelerate all that we do across research and care.

"For me personally, this year would have been the 60th birthday of my first partner Alan who died, and at a deep emotional level I knew that this year was the right time for me and my family to look at how I could continue to support the acceleration of change, whilst passing on the responsibility of the CEO role. As many have said over the years, SUDEP Action is a club that no one wants to join, but it can be a lifeline. For me it has been a particular privilege to have made thousands of connections with suddenly bereaved families and to have had a glimpse of the love that flows through generations of families and communities.  It is this which explains why SUDEP Action has always punched above its weight in impact in the UK and worldwide.”

Read Jane’s full message here   Message from Jane Hanna