Dravet Syndrome UK welcomes Stephanie Smith to Board of Trustees

Posted 26th June 2024 in News

We’re delighted to announce the appointment of Stephanie Smith to the Board of Trustees for Dravet Syndrome UK (DSUK), a charity dedicated to improving the lives of those affected by a rare, life-limiting and life-long form of epilepsy.

Stephanie is mother to 12-year old twins, Jake and Ella. Jake is living with Dravet Syndrome. Stephanie, along with husband Wayne, live in the Lake District. They have been an active part of the Dravet Syndrome UK community since Jake’s diagnosis in March 2013 when he was just over 18 months old.

Stephanie and family

Stephanie says: “A diagnosis of Dravet Syndrome is a life-altering experience. As a family we have experienced years of navigating the ups, downs, adventures and misadventures that will be familiar to all families living with Dravet Syndrome, and other families whose children have additional needs. 

I have always deeply respected Dravet Syndrome UK and all the incredible team that work tirelessly in everything they do for the families. From the conferences and family gatherings to the medical research and online support, the charity has played a huge part in my family’s life. I’m so pleased to be taking on the role of Trustee. It’s incredibly rewarding to have the opportunity to join the charity on their mission to improve the lives of all families affected by Dravet Syndrome.”


We are thrilled to welcome Stephanie to our Board of Trustees. Families are at the heart of everything we do at Dravet Syndrome UK, and it’s very important to us that parents such as Stephanie, with lived experience of Dravet Syndrome, are part of the Trustee team. As a business owner and qualified primary school teacher, Stephanie also brings a wealth of expertise which will be invaluable to enable the charity to continue to grow and support more families.

Galia Wilson, Chair of Trustees, DSUK

Stephanie has had a varied career including working as a professional singer, a senior carer, in the hospitality industry and is a qualified primary school teacher. In more recent years, Stephanie manages three businesses with her husband Wayne including a power washing company, composite decking firm and a facilitation management and cleaning company

Stephanie joins the existing DSUK Board of Trustees, including Galia Wilson and Kelvin Hughes, both parents of children with Dravet Syndrome, John Lloyd, a specialist in charity governance, Alex Williams, a Financial Director, and Neil Williamson, an Epilepsy Nurse Specialist

Visit www.dravet.org.uk for more information about Dravet Syndrome and how the charity brings hope to families living with this condition. 

Steph and Jake

About Stephanie

Hear more from Stephanie in her own words about her family's journey and her role as a Trustee.

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