Awareness Month Success

Posted 1st July 2022 in News

Dravet Syndrome Awareness Month, June 2022, hailed a fantastic success!

Our aim during this year's Awareness Month has been to spread knowledge of Dravet Syndrome far and wide, throughout every part of the UK. Because Dravet Syndrome is a rare condition, spreading awareness is incredibly important, leading to improved diagnosis and care. 

Our campaign this year has been a huge success, and we couldn't do it without the help and support of our incredible community. We'd like to thank each and every person who has got involved this June. From sharing our social media posts, to setting up a fundraiser; from sharing your family's story, to holding an awareness event, you've been absolutely fantastic and have made #DravetAwarenessMonth 2022 the biggest yet!

Awareness month 2022 montage

Some awesome awareness month activities have been;


“Raising awareness is vital to ensure that more individuals with Dravet Syndrome are correctly diagnosed. As well as children, we know that there are adults out there who are still undiagnosed. It’s very worrying, as it means they won’t be getting the support they need, and they are likely to be on medication that can make their seizures worse.

Kelvin, Iwan's Dad

Press Coverage

We're delighted to have worked with a number of families this Dravet Syndrome Awareness Month to share their stories to local and national media. We'll be adding coverage to this list, so please don't worry if you think something is missing. A huge thank you to Kate Sidwell who has been working with us to deliver this PR campaign.

Penny (Parents, Adam & Carrie): Yorkshire Live |  BBC Radio Sheffield (Howard Pressman Show - 29th June - 1 Hour 49 Minutes into the programme) |  BBC Look North (Evening News - 29th June - 6.30PM)  |  Hull Daily Mail  |  The Star  |  Wales Online

Liam (Parents, Liam & Clare): Belfast Telegraph |  BBC Radio Foyle Interview (Mark Patterson Show - 15th June - 35 Minutes into the programme)

John Joseph (Mum, Georgina): Chronicle Live  |  The Northern Echo |   Northumberland Gazette

Harry (Mum, Emma): Rhyl, Prestatyn & Abergele Journal

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  |  Sussex Express

Frankie (Mum, Stacey): Edinburgh Evening News  |  Edinburgh Live  |  Scottish Sun  |  Daily Record 1  |  Daily Record 2  |  MSN 

Iwan (Parents, Kelvin & Heather): The Leader

Paige (Parents, Sam & Mike): BBC News Online  |  Devon Live  |  BBC Radio Devon (Breakfast Show - 29th June - 1 Hour 34 Minutes into the programme)  |  The Mirror  |  The Florida Star  |  Daily Record  |   National World   |   Coventry Telegraph |  Gloucestershire Live  |   Okehampton Today  |   News Week  |   Belfast Live  |   Grimsby Telegraph

Joe (Parents, Emily & Toru): My London

Tom (Parents, Sue & Andrew): In Your Area

Josie-Mae (Mum, Lyz): BBC Radio West Midlands (Elise Evans Show - 12th July - 1 Hour 24 Minutes into the programme) |  Birmingham MailRedditch Standard  |  Redditch Advertiser  |  BBC Hereford & Worcester Radio

Bradley (Dad, Brett): Oxford Mail  |  Herald Series