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June was Dravet Syndrome Awareness Month 2026, an annual campaign dedicated to raising the profile of Dravet Syndrome and calling for greater awareness, support, and understanding for everyone affected by this devastating neurological condition.
This year, our theme was, ‘Love Is’, where we invited families to tell us, in their own words, what love means to them while living with Dravet Syndrome. We also announced the findings from our recent Family Survey, and asked all those affected by Dravet Syndrome to help us shape our research priorities.
The month culminated in participation in the Big Give, Global’s Make Some Noise and NCVO’s Small Charity Week campaign, where your kind donations were DOUBLED, through funding awarded by Postcode Places Trust. Thank you to everyone who supported this fundraising effort – a huge £5,230 was raised, with £5,000 of this being matched, resulting in a £10,230 funding boost to fund life-saving seizure monitors, providing peace of mind for worried and exhausted families.
It’s been a busy month with over 2000 visitors to the DSUK website and a total reach of over 250,000 across our social media channels. You’ve switched your social media profile pictures to include our Awareness Month frame and you’ve shared, liked and commented on our posts. For this, and helping us to amplify the voices of the Dravet Syndrome UK community, we can’t thank you enough.
Your stories
We’d like to express our heartfelt thanks to all those who bravely shared their Dravet Journeys across the month, on our website and online media – the families of:
- Lottie (Hemel Today | Herts Advertiser | Charity Today News)
- Mo (Birmingham Mail | Bromsgrove Standard | Bromsgrove Advertiser | B31 Voices)
- Jessie (Derbyshire Times | MSN | Derby Telegraph)
- Robbie (Fife Today)
And to our Chair of Trustees, Galia, for speaking with MIX 92.6 radio.
You can read all of our Dravet Journeys at https://www.dravet.org.uk/personal-stories/ and if you’re interested in sharing more about your experiences of Dravet Syndrome, contact [email protected].
Special Days
Dravet Syndrome Awareness Month also includes two very special days in the calendar.
The first is Dravet Syndrome Remembrance Day, where we take the time to reflect and remember all of our loved ones from the Dravet Syndrome community who have tragically been taken too soon. In a permanent tribute to their memory, our ‘Wall of Remembrance’ can be found here. We are here for you, always and you can find out more about our bereavement support here.
The second is International Dravet Syndrome Awareness Day which took place on the 23rd June. We’d like to share our gratitude to all those who took part in our ‘Love Is’ campaign this year. Your contributions, which we shared across our social channels, helped us to amplify the voices, experiences and strength of the Dravet Syndrome UK community. A few of your photos can be seen below.
What is Dravet Syndrome?
Dravet Syndrome is a rare, life-long and life limiting neurological condition. It includes seizures, intellectual disability and a range of associated health conditions known as ‘comorbidities’.
About Dravet Syndrome UK
Dravet Syndrome UK supports almost 600 families living with Dravet Syndrome. We are the only UK organisation dedicated to improving the lives of those affected by Dravet Syndrome.