Love is Dravet Syndrome Awareness Month 2026

Our theme for Dravet Syndrome Awareness Month is ‘Love is’. We’re inviting families to tell us, in their own words, what love means to them while living with Dravet Syndrome.

For example,

• “Love with Dravet Syndrome is… staying strong on the hardest days.”
• “Love with Dravet Syndrome is… celebrating every small victory.”
• “Love with Dravet Syndrome is… never giving up.”

Here’s how:

• Write a short message on a piece of A4 paper, answering the prompt: “Love with Dravet Syndrome is…”. This can be from anyone in your family: parent/carer, sibling, grandparent, or the whole family together.
• Keep your message personal and honest, there’s no right or wrong answer.
• Take a photo of you holding up the piece of paper. Feel free to include family members in the photo.
• Send your photo to [email protected] by 1st June 2026.
• If you don’t want to send in a photo, please note down your answer in an email and send to [email protected].

How your content will be used

Your submission may be shared across:

• Social media (Facebook, Instagram, LinkedIn)
• Our website
• Awareness campaign materials throughout June

Your story will help raise awareness, build understanding, and show the strength of families living with Dravet Syndrome. Thank you so much for sharing with us.

This is a free, easy and fantastic way to raise awareness. Just update your social media profile picture to include our frame.

Here’s how:

• Click here for our social media profile picture and click ‘view template’
• Log in, or set up an account with Canva – it’s free!
• Enter your name and click continue, then enter the sign-in code (check your junk/spam folder if you don’t receive this)
• Click ‘open in editor’
• Click ‘uploads’ and ‘upload files’
• Select the image you’d like to use from your device – choose a nice one of the person you love living with Dravet Syndrome, or a group one of them with you and/or your family
• The image will then preview – click on it to select it to add to the design
• Drag and drop the image onto the circle placeholder in the middle of the design
• Click the ‘Share’ button (or the symbol which looks like a letter tray and an upwards arrow 📤) and then click download
• The download settings should already be correct, but ensure it says PNG in the file type
• When the design has downloaded to your device add it to your social media channels in the way you’d usually update your profile picture

Dravet Syndrome UK wants to fund research that truly matters to families living with the condition, which is why we’re giving families the opportunity to directly influence where our research funding goes.

Earlier in the year, we asked our registered families to share, in their own words, the questions they’d most like research to answer. Thank you to everyone who took part in this priority setting project.

We have now analysed the responses and identified 12 potential research themes. In June, we will be sending these 12 themes back to our families, and asking them to rank them. Following this, the top themes will be used in our research strategy, where we outline to researchers what areas of research we are interested in funding. 

This is your chance to have your say on the focus of the research we fund in the near future. This ranking process will only be open for June, so please keep an eye out and don’t delay responding!

You need to be registered with Dravet Syndrome UK to take part. We’ll post the link here on 1st June so that you can rank the priorities.

We’re delighted to be taking part in Big Give, Global’s Make Some Noise and NCVO’s Small Charity Week campaign.

Can you make a donation to support our vital work by clicking here between 22nd – 29th June? Donations you make will be DOUBLED by The People’s Postcode Lottery!

Support from Dravet Syndrome UK makes a real and lasting difference to families navigating life with Dravet Syndrome. It helps a newly diagnosed family find a community that truly understands, at what can be one of the most frightening moments of their lives. It supports the research that is gradually building a clearer picture of how Dravet Syndrome develops and how it can be better treated. It helps ensure that the clinicians and professionals around those families are better equipped to support them. And it funds the practical support and grants that give families a little more stability in daily life, at every stage of the journey, from infancy through to adulthood.

Funds raised through this seven-day online campaign will help us to provide seizure monitors to families through our Seizure Monitor Fund. Seizure monitors are not available on the NHS and can cost between £500-£1,500. Your support will help protect vulnerable children and give exhausted parents peace of mind.

The campaign will multiply the generosity of our incredible donors, as donations made through our campaign page hosted on the Big Give website between the 22nd and 29th June, will be DOUBLED by The People’s Postcode Lottery. So £50 from you, becomes £100 !

How to get involved:

• Click here to make a donation  to Dravet Syndrome UK between Monday 22nd and Monday 29th June. Your donation will be DOUBLED at no extra cost to you!
• If you are planning to make a donation to Dravet Syndrome UK in June, to help us maximise the match-funding available, please save your donation and pay it in here between Monday 22nd and Monday 29th June.

We’d like to thank The People’s Postcode Lottery for match-funding donations.

To every single person who donates, you have our heartfelt thanks for helping us to support more families living with Dravet Syndrome in the UK.

We need your help to amplify the voices of the Dravet Syndrome UK community. Can you follow our social media accounts, engage with content and share posts that you find interesting, informative, and educational?

Here’s how:

• Follow our social media accounts at: Facebook | Instagram | LinkedIn
• Tag us in if you are posting your own awareness month content
• Engage with our posts by giving a like
• Share our posts, stories and reels so that your social media friends and followers can also see our content

We’ll be sharing the stories of four families who care for children/adults living with Dravet Syndrome across the month. They’re all of different ages, to highlight the course of the condition and demonstrate it’s life-long impact.

In the first week of June we’ll share the story of a two year old who is living with Dravet Syndrome, week two we’ll share a 12 year old’s story, week three we’ll focus on the transition to adult services by sharing a 20 year old’s story and in week four we will share the story of a 41 year old.