Awareness Month Success
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!
Some awesome awareness month activities have been;
- Joining with the Dravet Syndrome community across Europe to share an awareness raising video on International Dravet Syndrome Awareness Day
- Lighting up Meadowhall Shopping Centre in Sheffield for the second year running
- Sharing new and updated journeys with Dravet Syndrome - Sanvi, Zaid & Tom
- A series of short video clips from our world-class Medical Advisory Board sharing facts, myths & misperceptions about Dravet Syndrome
- Bringing together 60 families at Center Parcs for our annual family weekend away - the first time we've been back together for a very long time! We held an awesome Superheroes party with 257 attendees and welcomed 49 siblings to our Sibling Activities - a fantastic opportunity for siblings to spend time with others who know what they're going through and have lots of fun!
- Raising awareness among nurses, with an opinion piece by our Medical Advisory Board member Amanda Tomalin published in the Nursing Times
- Over 180 supporters used our Dravet Syndrome Awareness Month social media profile frame
- Supporter Brett Parsons, dad to Bradley, who is living with Dravet Syndrome, completed the 4x4x48 Challenge, raising £1600 for DSUK and talked with fellow dad Lee on The Black Country Blokes podcast.
- A mountain of press coverage (see below!)
- We also paid loving tribute to those we have sadly lost too soon on Dravet Syndrome Remembrance Day
“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.
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 Mail | Redditch Standard | Redditch Advertiser | BBC Hereford & Worcester Radio
Bradley (Dad, Brett): Oxford Mail | Herald Series