A Q&A with Helen Evans, Director, DSUK

Helen Evans is Director of DSUK. In this interview, she talks about her first year at the charity, the impact of COVID-19 and what inspires her so much about the Dravet Community.

What’s your role at DSUK and when did you join? What’s the first year been like?

I'm the Director of DSUK and joined at the start of September 2019.  A highlight of my first year was the DSUK Conference in 2019. It was so nice meeting families and hearing from clinicians about advances in our understanding and treatment of Dravet Syndrome.  It's also been exciting engaging with clinicians on research developments that DSUK are co-funding.  Our partnership with UCL and GOSH is now in its 3rd year with the development of a novel gene therapy for Dravet Syndrome. As has been the case for everyone, the onset of COVID-19 has been challenging with our income taking a sharp drop.  However our medical advisors, trustees and staff team have all rallied round tremendously working continuously through lock-down.  I've felt incredibly proud to be such a dedicated team.

Could you give a brief description of what your role entails and a flavour of an average day at DSUK?

The Director role was newly created in 2019 at a point where DSUK had grown to supporting over 500 families with Dravet Syndrome. The Director's job is to deliver the charity's strategy set by the board of trustees and in doing so working closely with the charity's Chair, Galia Wilson. Every day is different! Just this week I've been speaking with clinicians to finalise publication of our DSUK COVID-19 survey results, liaising with the British Paediatric Neurology Association to plan DSUK's first virtual stand at their January conference, and talking with technology experts to help plan our own hybrid conference in 2021. We're currently in the process of finalising our 5 year strategy for 2021 to 2026, and in doing so reflecting on family feedback from our recent feedback survey as we've been doing this.  I'm really looking forward to this being shared with families.  

How is COVID-19 affecting your job and you personally?

Like everyone things have changed both at work and at home. At the onset of COVID-19 it felt like we'd never been busier at DSUK!  As a team we were arranging webinars, updating our Q&A, hosting quizzes and more.  It was a tough call postponing Center Parcs in 2020 knowing how important that is to families but something we needed to do to prioritise family safety.  I'm very much looking forward to 2021 and the opportunity to meet families again at Center Parcs and our DSUK Conference. At home I had some good news. After two years of trying to get a place at special school, my son, Sammy (who doesn't have Dravet Syndrome but does have a diagnosis of autism), was finally offered a place and has been able to attend since schools re-opened in September.

What did you do before DSUK and what brought to join DSUK?

Before DSUK I was Chief Executive of a rare neurological condition charity called Cavernoma Alliance UK.  Before that I ran an advocacy service in Oxfordshire and was formerly a Head of Safeguarding for an international aid agency.  Working for a rare disease charity is such a privilege, getting to know the families we support and having the opportunity to work with clinicians to improve care and treatment.  My first year has flown by and I'm very much looking forward to many more with DSUK.

What is different about working at DSUK and what inspires you the most?

The one thing that really stands out for me is the passion everyone has for improving the lives of people with Dravet Syndrome. From our families, to the clinicians, trustees, staff, volunteers and many other supporters.  Everyone is united in their common goal of making a difference.  This is such a tough condition to live with and I'm continually inspired and humbled by the Dravet community.