When Dravet Syndrome UK registered as a charity back in 2009 we were not aware of any adults living with Dravet syndrome within the United Kingdom. As time has moved on we are now delighted that we have a significant number of adults on our membership list.
More and more adults are being tested and given the correct diagnosis, which is wonderful. One thing that has been apparent, however, is the lack of support that is available when these patients transition into adult services.
For this reason Dravet Syndrome UK have set up the DSUK Assistance Fund 16+. This fund is for those families whose children are aged 16 and over and families can apply to us for anything that will improve the lives of their Dravet adult. For guidance on the types of things we will fund please see our application form. The limit on each application is a maximum of £1,000 per family per year, but we will look at each individual case to assess the needs and whether or not they are being met elsewhere.
As with all our assistance programmes we will not be means testing but we will require a letter of diagnosis as proof of the condition. DSUK Assistance Fund 16+ is a rolling programme and applications will be accepted and reviewed at any time. New applications can be made annually, however new families and first time applicants will take priority, so subsequent applications may incur waiting time.