Claire Eldred
Director — I’m responsible for the daily running of the charity and making sure we meet our strategic objectives. It’s a privilege to be part of the Dravet Syndrome community – I am inspired every day by our amazing families.
We are a small team, made up of eight staff and six trustees. We have one goal in common – to achieve our mission of bringing hope to families affected by Dravet Syndrome in the UK.
Our dedicated team works very closely together to ensure that we are delivering against our main aims: supporting families, raising awareness and understanding of Dravet Syndrome, funding medical research, and improving the lives of those living with Dravet Syndrome.
Our staff and trustees
Ceri Hughes
Chief Science Officer — My role at Dravet Syndrome UK is to drive research into the priorities of families living with Dravet Syndrome by expanding The Charity’s network of researchers and clinicians.
Katherine Raven
Head of Marketing and Communications — My role has overall responsibility for the development and delivery of the charity’s marketing and communications strategy.
Tania Lewis
Head of Fundraising — My role is to raise money to enable us to help more families with the support they need and fund research to provide a better future for those affected by the condition.
Teresa Finch
Family Support Manager — I am Mum to Amy 24, Ellie 21 and Louie 13. My daughter Amy was born in April 1995, she had her first seizure at just 8 weeks. That was the beginning of our journey.
Linzi Cowley
Family Support & Fundraising Coordinator — I’m the first point of contact that new families make with DSUK, I process all the new family requests to join DSUK. I’m also the person to contact if you need anything to help support your fundraising events.
Sandra Awuah
Head of Family Services — My role focuses on driving forward DSUK’s key strategic objectives—‘Every Family Counts’ and ‘Empowerment of Families’—to ultimately improve outcomes for families by ensuring they have access to the right resources, guidance, and advocacy.
Natalie Perkins
Marketing, Communications & Fundraising Manager — My responsibilities at DSUK are to look after social media, website and other communications, with the aim of keeping everyone updated on the latest developments in Dravet Syndrome.
Claudia Congrave
Marketing and Communications Manager (maternity cover) — My role involves engaging with those impacted by Dravet Syndrome via our communications channels, sharing their stories and alerting them to the crucial support available.
Chris Williams
Team Administrator — I play a crucial role in supporting the busy DSUK team by handling a wide range of administrative and logistical tasks.
Galia Wilson
Chair of Trustees — When my son Arlo was only 10 weeks old, he had his first twenty minute long tonic clonic seizure. Then the long and often very scary journey started…
Alex Williams
Treasurer and Trustee — As a current CFO and holding previous roles in the life sciences sector, I’ve seen how challenging life is for families living with Dravet Syndrome. It’s a great privilege to give something back to this inspirational community.
Stephanie Smith
Trustee — I’m Steph, and among other things, the most important role in my life is being Mum to twins, Jake and Ella who are twelve. Jake is living with Dravet Syndrome.
Neil Williamson
Safeguarding Trustee — I am a Children’s Epilepsy Nurse Specialist with many years of experience working with children and young people with Dravet Syndrome in hospitals, hospices and the community.
John Lloyd
Trustee — I joined the board of Trustees for DSUK in January 2019. Supporting the team in their work, which makes such a massive difference to families living with Dravet Syndrome, is a huge privilege as well as a source of delight.