Dravet Syndrome UK (DSUK) has appointed Helen Evans as its first Director. Helen brings a wealth of experience to the role, having worked as a charity director since 2008.
Most recently, she was Chief Executive of Cavernoma Alliance UK and Getting Heard, the Oxfordshire advocacy service. Prior to this, she headed up Oxfam GB’s global Safeguarding function and later campaigned successfully for changes in UK law to better safeguard beneficiaries from abuse.
Until recently, little was known about Dravet Syndrome – a rare neurological condition that affects approximately one out of every 19,000 children born in the UK. Dravet Syndrome causes severe, difficult to control seizures, alongside varying degrees of learning disability and other issues, such as autism, mobility problems, speech difficulties and feeding problems.
Galia Wilson, Chair and Trustee, DSUK said:
“Living with a child or adult who has Dravet Syndrome can be a very difficult and potentially isolating experience.”
The charity was created in 2008 by a small group of parents with a mission to bring hope to families living with Dravet Syndrome through support, education and medical research.
Evans’ appointment comes at a time of significant change, both for DSUK and the Dravet community.
“Helen is the first Director to be appointed for our charity, as awareness of Dravet Syndrome increases, and diagnosis improves, the number of families requiring support has expanded. We started out supporting around 30 families, now – thanks to the hard work of our team, led by Teresa Fincher and Linzi Cowley – we support more than 500. At the same time, its an incredibly exciting and hopeful time for the future of Dravet Syndrome, with new and emerging treatments on the horizon.”
DSUK created the Director role to consolidate and build upon the achievements of the team to date and to navigate the opportunities and challenges of the changing medical and scientific environment.
“Helen brings the experience required to help us do just that, she understands rare diseases and will help us continue to meet our objectives during these momentous times for the Dravet community”.
“I’m thrilled to be joining DSUK at such an exciting time, I’m inspired by all the great work achieved to date. I look forward to building on these successes as the charity aspires to reach even more families and help drive forward improved treatment options. Dravet Syndrome is such a devastating condition. It is a privilege to be joining an organisation that makes such a positive difference to the children and young adults living with Dravet Syndrome and their families”.