30 for 30 the Interim CEO’s perspective

When I first learned I’d been selected to lead SUDEP Action through 2025 whilst Sammy Ashby is on maternity leave I was really excited to be joining a team on the eve of their thirtieth birthday with such an important role to play for so many people.

I then learned quickly that the quality of the staff team at SUDEP Action is matched only by the enthusiasm and commitment of our AMAZING supporters and Trustees, without whom none of the charity’s work would be possible.

Unlike other charities who often receive local or central government funding for their work, the shameful under-funding of support for those bereaved by epilepsy, of research into the causes of SUDEP and of tools to help raise awareness or manage SUDEP risk means that the charity needs it’s supporters now more than ever.

Despite the ever rising costs that all charities are facing, with your support we can continue to provide our specialist services, and crucially to develop and grow them  further as we continue to close the gap between where we are now, and a world where we see no more preventable deaths from epilepsy.

My 30 for 30 challenge

Continuing the work of the five founders who came together to make a difference thirty years ago this year is an incredible privilege. So much has been achieved in that time from the first step of getting SUDEP officially recognised as a cause of death, to the development of our checklists for clinicians, EpSMon app to help people manage risk independently and the globally significant Epilepsy Deaths Register aiding research; to name but a few of the steps forward that have been taken.

But so much more still needs to be done to prevent epilepsy deaths where we can, and in our thirtieth year – during which we are reflective, but with a laser focus on the future –  we would love it if you could take on a 30 for 30 challenge and help us to raise the essential funds that will both save lives in the future and give support and comfort to the bereaved now.  

30 for 30 is an easy way of getting involved in whatever way works for you – and from 30 cakes being baked for sale to friends and family to 30 days of gym sessions, 30 original paintings being created for sale and even 30 minutes of teenage silence being promised for 30 days (!) this summer will see our supporters take on a huge range of challenges to raise money – and for me this will mean 30 days of 30 minutes on my rowing machine which is normally employed as a very helpful clothes hanger! But which will finally be dusted off and used for its intended purpose.

Thank you in advance for whatever 30 for 30 you choose to do in support of SUDEP Action in our birthday year, as the charity can only continue to make a difference with your ongoing support.

Thank You

Dan Freshwater

Interim CEO