Dravet Syndrome Awareness Month

We're delighted to announce that Dravet Syndrome Awareness Month is back for 2024! Join us in sharing facts, stories and activities to raise awareness of Dravet Syndrome across the UK this June.

This year, our theme is ‘Little Moments Matter’ and is inspired by conversations we have with families. We know there is so much going on for families living with Dravet Syndrome and the worry, concern and challenges faced in daily life can be difficult to comprehend. With that in mind, we've asked our community to focus in on the 'Little Moments' - those things that really matter when caring for their child or adult living with Dravet Syndrome.

Throughout the month we will be sharing the stories of families affected by Dravet Syndrome, some exciting research news and more!

Key Dates

Dravet Syndrome Awareness Month will run for the whole of June, with two extra special dates to add to your diaries;

Dravet Syndrome Remembrance Day: Saturday 15th June

Dravet Syndrome Remembrance Day will take place on 15th June and will be a time for our community to reflect and remember those whom we have so sadly lost. We mark this day by sharing our permanent, virtual, Wall of Remembrance, dedicated to our loved ones who are no longer with us. Families who have experienced a bereavement due to Dravet Syndrome are invited to submit their loved one’s name to be included on our Wall of Remembrance via info@dravet.org.uk, if they wish to do so.

Dravet Syndrome Awareness Day: Sunday 23rd June

Look out for our special Awareness Day film which we'll share on Sunday 23rd June. Please like and share with your networks to increase engagement and awareness. This year our film will be focussed on our theme of 'Little Moments Matter'.

Get Involved

There's a number of ways in which you can get involved and help to raise awareness of Dravet Syndrome:

• We'll be sharing plenty of facts and stories across the Dravet Syndrome UK's social media accounts throughout the month. Please do share, like and comment to help increase engagement and reach of our posts.
• You can also add our photo frame to your social media profile pictures by downloading our Twibbon by clicking here. 
  
• Use #DravetAwarenessMonth, #LittleMomentsMatter, #DravetRemembranceDay and #DravetAwarenessDay when posting on social media
• Why not set up a Facebook fundraiser, to not only raise awareness, but raise funds too, to support our vital work. It's easy to get started - just click here. You can fundraise on Instagram too - just click 'Add Fundraiser' when you set up a post.
• Alternatively, you can find out other ways to donate here.

Press Coverage

Thank you so much to families living with Dravet Syndrome who have shared their story in local and regional press to help raise awareness this month.

• Rosie, Mum to Henry who lives with Dravet Syndrome: BBC News Online | Radio Solent Dorset | Daily Echo
• Catherine, Mum to Scarlett who lives with Dravet Syndrome: Nottingham Post | Gelding Eye
• Tracy, Mum to Drew who lives with Dravet Syndrome: BBC Radio Scotland (from 2hrs 54mins into the programme) | Aberdeen Live | STV News (Scotland) on evening programme on 20/06/24 | STV Online
• Beth and Craig, Parents to Harry who lives with Dravet Syndrome: Solihull Observer | BBC Radio West Midlands (from 1hr 27mins, 1hr 46mins, 2hr 28mins and 3hr 52mins into the programme) | BBC TV Midlands Today (start of the programme)
• Karen, Mum to Zac who lives with Dravet Syndrome: North Wales Pioneer
• Emily, Mum to Curtis who lives with Dravet Syndrome: BBC News Online | BBC TV South East (13 mins 34seconds into the programme)
• Kim, Mum to Will who lives with Dravet Syndrome: Sussex Express
• Susan, Mum to George who lives with Dravet Syndrome: BBC Three Counties Radio (3hours 7mins into the programme)