Dravet Syndrome UK – new professional advisors

Dravet Syndrome UK (DSUK), http://www.dravet.org.uk the charity dedicated to improving the lives of those affected by Dravet Syndrome, is expanding its board of professional advisors. Dravet Syndrome is a life-limiting neurological condition that occurs in one child out of every 15,000 born in the UK. 

In 2019, the number of families that DSUK supports grew to more than 500. Significant progress has been made in the scientific understanding of Dravet Syndrome, enabling the development of new and emerging treatments. Given this changing environment, DSUK announces the following appointments to its Professional Advisory Board. 

Professor Helen Cross OBE becomes Chair

A globally-recognised authority on Dravet Syndrome, Professor Helen Cross is appointed to the newly-created role of Chair. Awarded an OBE in 2015 for her services to children with epilepsy, Professor Cross is currently Prince of Wales’s Chair of Childhood Epilepsy at UCL-Great Ormond Street Institute of Child Health, Great Ormond Street Hospital for Children, London and Young Epilepsy, Lingfield, UK.

Commenting on her appointment, Professor Cross said,

DSUK has an incredibly important role to play within the Dravet Syndrome community. The support and information they provide makes a huge difference for families living with this difficult, life-limiting syndrome, while their fundraising and support of medical research is greatly valued. I look forward to working even more closely with the charity during exciting times of change ahead

Dr Andreas Brunklaus brings additional expertise

In recognition of his recent research into the natural history of Dravet Syndrome and quality of life expertise, Dr Andreas Brunklaus, represents a new addition to DUSK’s panel of Advisors. Paediatric Neurologist at the Royal Hospital for Children, Glasgow, and Honorary Senior Clinical Lecturer at the University of Glasgow, Dr Brunklaus joins alongside his colleague and existing Advisory Board member, Professor Sameer Zuberi. 

“Receiving a diagnosis of Dravet Syndrome can be devastating for families and feel very isolating”, explained Dr Brunklaus. “It has an impact on so many different aspects of the families’ lives, not only health-related quality of life but overall quality of life. As well as providing a wealth of information, DSUK offers a place for families to share their concerns, to seek advice, and get support on how to address the wide range of challenges that they encounter. I think this is really important and I’m delighted to be joining the Advisory Board”.

Setting priorities for the future

“These appointments will help us navigate the scientific and medical environment, and set priorities for where DSUK can make the most difference for families living with Dravet Syndrome,” said Galia Wilson, Chair, DSUK. “Formalising Professor Cross’s role as Chair recognises the important contributions she is making on a global stage and will help ensure DSUK remains closely aligned to the latest medical knowledge regarding this complex condition.

“We are also thrilled to welcome Dr Brunklaus to our panel of Advisors”, continued Galia. “While seizure control continues to be critical, there is an urgent need to also address the often severe comorbidities associated with Dravet Syndrome. Dr Brunklaus brings valuable expertise and insights that will help us achieve this goal”. 

About Dravet Syndrome:

Dravet Syndrome is a rare neurological condition causing severe, difficult to control seizures, alongside varying degrees of learning disability and other issues, such as autism, mobility problems, speech difficulties and feeding problems. Dravet Syndrome affects around one in every 15,000 people. In most cases, Dravet Syndrome is caused by a mutation in a gene known as SCN1a.

About Dravet Syndrome UK:

Dravet Syndrome UK (DSUK) is an independent charity dedicated to improving the lives of those affected by Dravet Syndrome through support, education and medical research. We do this by:

  • Supporting families affected by Dravet Syndrome emotionally, practically and financially. 
  • Raising awareness and understanding of Dravet Syndrome among medical professionals
  • Funding medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and to hopefully one day find a cure