From the CEO: It’s great to be back

Returning from 11 months off on maternity leave feels strange, but it’s also very familiar to be back – a lot like returning to school after the holidays. 

Although I’ve been away from being CEO of SUDEP Action for a while, of course I’ve been watching (and cheering on) from the sidelines. I’ve witnessed the many wonderful things that you, our supporters, have achieved for us, through campaigning and raising vital awareness, fantastic fundraising events, and being there for the charity however you can. In even the darkest times, you’ve continued helped us shine a light on epilepsy deaths and SUDEP. Thank you!

I’ve also seen how hard the small, but brilliant SUDEP Action team has continued to be there for anyone who needs us, whether they are bereaved, living with epilepsy or supporting someone with the condition. Being the only organisation who really understands what it is like to have a loved one die suddenly, repeatedly fighting against injustice, and not being afraid to take on huge national and local systems to push for change and accountability isn’t easy. But they do this tirelessly, with positivity and a determination that we’ll see a future where there are no preventable epilepsy deaths.

The dedication, heart and drive I’ve seen, and have experienced first-hand, throughout my 11 years with the charity, never fails to amaze and inspire me. It is this strength that has seen SUDEP Action and our supporters achieve so much in our 30-year history. So, as we head into the second phase of our charity strategy, where we will be ‘propelling’ our work forward to have even more reach and impact, I’m optimistic and excited by what is to come and look forward to sharing some of our plans with you soon. 

One thing that is really important to SUDEP Action is providing opportunities throughout the year to supporters, especially those of you who are bereaved, to come together as a community with others who understand. Our Coffee Clubs around the country and the incredibly moving Memorial Service in May last year are two examples of how we do this in person; though we also have many online opportunities throughout the year, such as during Purple Day, Epilepsy Memorial Day and SUDEP Action Day. 

I mention this because one part of our upcoming strategy is to make sure these opportunities work as best as they can for those we support. We therefore want to look at where we might be able to improve things, do things a little differently, or perhaps offer something new, if it will have a positive impact on how you feel you can engage and connect with us and others in our community. This will be one of my key priorities over the coming months, so we can head into our 2026-2027 charity year with plans in place.

Watch this space… 

Sammy Ashby
SUDEP Action CEO