Dravet Syndrome UK

Dravet Syndrome UK operates on a national level and is made up of a team of trustees, world-renowned professional advisors, staff and volunteers. Our small team works closely together to ensure we meet the needs of families affected by Dravet syndrome, whilst working with professionals in the field of paediatric neurology on vital research projects.

Dravet syndrome can be a very isolating condition. It is so very different to mainstream epilepsies and families can often be left feeling very alone and as if no one really understands the complexity of their child’s condition. Here at Dravet Syndrome UK our aim is to change that, which is why family support is an integral part of the charity.

The charity supports families in a number of ways, such as our ‘The Night-time Monitors Scheme’, ‘DSUK Assistance Fund 16+’ and organising and facilitating family meet ups, organising regular conferences, running and moderating a private online forum and providing support to families. We also endeavour to provide families with helpful resources that will enable them to access the best possible care for their child and have the most up to date information on the condition.

As a charity, Dravet Syndrome UK has three primary aims:

1. To support families affected by Dravet syndrome emotionally, practically and financially: - Hosting and moderating a UK Dravet Facebook forum providing an online community network and reducing the sense of isolation - Emotional and financial support through monitors and grants - Coordinating our annual Dravet weekend away for families and siblings - Operating the night-time assistance programme - Operating the 16+ assistance fund - Provision of literature and information on Dravet syndrome - Hosting a biennial Dravet specific conference.

2. To fund medical research into Dravet syndrome and other related genetic sodium channel epilepsies: - The charity remains committed to research and continue the partnership with the charity Sparks & GOSH to ensure we maximise our strategy and approach for research into Dravet Syndrome. In the last financial year Dravet Syndrome UK has funded two research projects to a total of £55,560. Since 2011, we have funded £204,000 of research. The charity has also in this period worked closely with a number of pharmaceutical companies keeping abreast of new research opportunities and also applying and being awarded unrestricted educational grants to help the charity continue to meet its objectives.

3. To raise awareness and understanding of Dravet syndrome within the professional community, therefore promoting a more accurate and swifter diagnosis thus benefiting Dravet Syndrome sufferers and their families' experiences.

Publication of the ‘Professional Guide to Diagnosis’, which aims to aid earlier and more accurate diagnosis of Dravet syndrome - Biennial Dravet UK conference for Families and Professionals - Attendance of relevant professional conferences and meetings to raise the profile of Dravet syndrome within the medical community - Presenting at professional conferences - Providing literature to professionals and the opportunity to attend the biennial Dravet specific conference

What does the money we raise go towards?

Any funds raised would be spent on our three primary aims, support, research and awareness.

Since 2009 our main event has been the Center Parcs family annual weekend away. In 2018 over 55 families attended and the charity provided a £250 grant to each family attending to help cover the cost of their accommodation. The charity also funds and organises a morning/afternoon event just for siblings. Due to the increase in families attending the weekend, we need to hire an additional medical team for future events. This weekend enables families with children of all ages including their siblings to attend and network together which is a rare opportunity for families. We will continue the provision of potentially life saving night time monitoring equipment including saturation monitors, video monitors, epilepsy alarms and fingertip monitors. We continually research to find the most reliable monitors available. Other funds and grants we offer the families is the 16+ Assistance fund for £1000 which is in place due to the difficulty in obtaining grants for adults, This has continued to grow due to both the increase in the number of adults being diagnosed with Dravet Syndrome and the transition of those already known to the charity into adulthood. The charity has been able to support families with older children by the purchase of iPads, computers, specialist furniture, and to subsidise short holiday breaks.

The charity also continues to provide the 'Bereavement Fund' of £1000 which can be used towards funeral costs or for anything that will help families during this sad and very difficult time.

● There is an urgent need for more research into the causes and complexities of Dravet syndrome and other related genetic sodium channel epilepsies:. Dravet Syndrome UK operates a specific research fund, into which people can donate or direct their fundraising as well as a percentage going directly into the research fund. The charity has also in this period worked closely with a number of pharmaceutical companies keeping abreast of new research opportunities and new research possibilities.

● Awareness - This encompasses a wide range of activity, including our own two day biennial conference for families and professionals and also by attending relevant professional conferences and meetings. We would be able to hold more large fundraising events such as the 10^th Anniversary Gala held at the Ned in London this year to gain more awareness. We can also continue to produce literature for healthcare professionals, such as the ‘Professional Guide to Diagnosis’ and Guidance for Care Providers’ for distribution to the medical community and for families we have the ‘Family Guide’ and the ‘Transition Guide’, which will help families prepare for transition to adulthood.