Dravet Syndrome UK announces new Chief Scientific Officer

Dravet Syndrome UK is delighted to announce that Ceri Hughes is joining the charity as its first ever Chief Scientific Officer (CSO).

Dravet Syndrome UK is a small, independent UK charity dedicated to improving the lives of those affected by Dravet Syndrome, a devastating and complex form of epilepsy that occurs in around 1 in 15,000 births. 

The new role has been made possible thanks to a major funding boost for Dravet Syndrome UK by the Chan Zuckerberg Initiative. The charity was recently selected to receive a $800,000 (approximately £600,000) grant over five years to accelerate its research programme. 

The Rare As One Project at the Chan Zuckerberg Initiative supports patient-led organizations fighting to find cures for rare and genetic diseases. The grant provides organizations with funding to build resources and tools to support their research goals.               .

Galia Wilson, Chair and Trustee, Dravet Syndrome UK, says: “We are thrilled to welcome Ceri as our first ever Chief Scientific Officer. 

“It’s an exciting time for Dravet Syndrome research with new treatments including gene therapies on the horizon, but there are still gaps in understanding and knowledge which have a huge impact on patients and their families.

“After a competitive recruitment process, Ceri stood out with her wealth of experience working with the scientific community and her first-hand experience of the devastating impact which Dravet Syndrome has on families. Ceri is exceptionally well placed to help us to drive forward our research strategy, develop our research network and further collaboration between families affected by Dravet Syndrome, scientists and clinicians. 

“We are extremely grateful to the Chan Zuckerberg Initiative for their generous grant which will enable us to put patients living with Dravet Syndrome and their families at the heart of research.”

Ceri joins Dravet Syndrome UK from research publisher Frontiers in Neuroscience where she was a Publishing Specialist, working with international scientists.

She has a degree in Neuroscience and a Master’s degree in Healthcare Ethics and Law, which have given her an understanding of the biology of Dravet Syndrome and the broader systemic interactions facing families.

Ceri also has first-hand experience of the impact Dravet Syndrome has on families as her brother Iwan lives with the condition.