New trustee brings personal experience to Dravet Syndrome UK board

DRAVET Syndrome UK (DSUK), has announced the appointment of Stephanie Smith to the Board of Trustees.

Dravet Syndrome UK is a charity dedicated to improving the lives of those affected by a rare, life-limiting and life-long form of epilepsy.

Stephanie is the 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 said:

“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 the incredible team that works tirelessly in everything they do for the families. From conferences and family gatherings to 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 its mission to improve the lives of all families affected by Dravet Syndrome.”

Galia Wilson, Chair of Trustees said:

“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.”

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

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