Meet the Team
We are a small team, made up of four staff and four 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.
Chair and Trustee
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...
Treasurer and Trustee
I am Dad to Hayden, Ceri and Iwan and we live in North East Wales with my wife Heather. Iwan has Dravet Syndrome.
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.
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.
I joined the DSUK team in March 2020 as Head of Marketing and Communications. From July 2021, I'll be taking on the role of Interim Director.
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.
Family Support & Fundraising Coordinator
My name is Linzi Cowley, 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.
Marketing, Communications & Fundraising Manager
I joined the DSUK team in July 2021. 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.