Dravet Syndrome Awareness Month
We're delighted to announce that following our first and hugely successful Dravet Syndrome Awareness Month in 2021, it's back for 2022! Join us in sharing facts, stories and activities to raise awareness of Dravet Syndrome across the UK this June.
We're continuing the theme of ‘Every Family Counts’. Families are at the heart of everything we do at DSUK. We’ve grown from a small charity, set up by a group of parents in 2008, to supporting more than 500 families.We know there are more families out there. Families who may not yet have a diagnosis of Dravet Syndrome but are struggling with all the challenges the condition brings without support. Or families who have a diagnosis but are unaware of the support available. This June, we’ll be asking for your help to reach as many families as possible - to raise awareness to find those ‘missing’, undiagnosed children and adults, to ensure they have the support they need. And to let ALL families living with Dravet Syndrome know that we are there for them.
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: Wednesday 15th June
Dravet Syndrome Awareness Day: Thursday 23rd June
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 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.
Thank you to all the families who have worked with us this Dravet Syndrome Awareness Month, sharing their stories to local media. Coverage like the below is really important in helping us find those 'missing', undiagnosed children and adults, to ensure they have the support they need. Every Family Counts, this month and always.
Penny (Parents, Adam & Carrie):
- Yorkshire Live
- BBC Radio Sheffield (Howard Pressman Show - 29th June - 1 Hour 49 Minutes into the programme)
- BBC Look North (Lunchtime News - 29th June - 1.30PM)
- BBC Look North (Evening News - 29th June - 6.30PM)
- Wales Online
Liam (Parents, Liam & Clare):
- Belfast Telegraph
- BBC Radio Foyle Interview (Mark Patterson Show - 15th June - 35 Minutes into the programme)
Harry (Mum, Emma):
Paige (Parents, Martin & Gemma):
- BBC Radio Sussex Interview (Sarah Gorrell Show - 23rd June - 1 Hour 14 Minutes into the programme)
- Brighton and Hove News
- The Argus
Frankie (Mum, Stacey):
Iwan (Parents, Kelvin & Heather):
Paige (Parents, Sam & Mike):
- Devon Live
- BBC Radio Devon (Breakfast Show - 29th June - 1 Hour 34 Minutes into the programme)
- The Mirror
Joe (Parents, Emily & Toru):
Tom (Parents, Sue & Andrew):
Dravet Syndrome Remembrance Day
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 email@example.com, if they wish to do so.
About Dravet Syndrome
Dravet Syndrome is a rare neurological condition that affects around one in every 15,000 people in the UK. Find out more about Dravet Syndrome here.
Support for Families
Find out more about the support we provide to families affected by Dravet Syndrome, including our annual Center Parcs weekend, our assistance grants and how to join us.
Receiving a diagnosis of Dravet Syndrome can be a frightening experience. Its important to remember you are not alone - other families are going through similar experiences.