Dravet Syndrome UK
@DravetUK
We are dedicated to improving the lives of children and adults living with Dravet Syndrome, a rare epilepsy, through medical research, education and support.
ID:475120607
http://www.dravet.org.uk/ 26-01-2012 18:17:41
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'The exercise helps with her very stiff limbs, mobility & is excellent for her mental health. Amy loves making the most of her pool membership, funded through the 16+ Assistance Fund. Thank you DSUK.' Glenys - Mum to Amy who lives with #DravetSyndrome .
dravet.org.uk/apply-for-gran…
Today, on #NationalSiblingsDay2024 , we wanted to share these practical tips to support #siblings who have a brother or sister living with #DravetSyndrome .
The resilience of siblings is phenomenal and can be such a hugely special bond.
More info at: dravet.org.uk/families/suppo…
Eid Mubarak to all Muslims in the Dravet Syndrome UK community! Have a wonderful and thankful time for the 'festival of breaking the fast', as you celebrate the close of Ramadan.
#DravetSyndrome #DravetAwareness #Ramadan #EidalFitr
Have you ever wondered how families living with #DravetSyndrome benefit from the #DSUKFamilyWeekend ? If so, you can get all the feels from this short clip, where Penney's parents Jo & Ross, who attended for the first time last year, talk it through for us.
dravet.org.uk/events/DSUK-fa…
📢Calling all researchers!
Help shape the future of epilepsy research with this 20-minute #CapacityBuildingSurvey from the #EpilepsyResearchInstitute . Whether you're a student, professor, technician, or clinician, your insights matter: epilepsy-institute.org.uk/capacity-build…
Help make this year’s #EveryDayinMay4Dravet campaign the best yet! Join DSUK & Tats Ward in Regent’s Park for a special 5K group run on Saturday 4th May at 10am.
For more details and to let us know you'll be there visit dravet.org.uk/events/every-d…
#DravetSyndrome #DravetAwareness
THANK YOU Electra & Taliya, siblings to Christian who lives with #DravetSyndrome , & friend Petra, whose older brother lives with #Epilepsy , for presenting to your whole school assembly & encouraging everyone to wear purple for #PurpleDay , raising a huge £315! 👏👏
The Wroxham School
A huge THANK YOU to Dinky Treats for donating £300, proceeds from a % of their day's takings & a super scrummy raffle, to raise awareness of #epilepsy for #PurpleDay .
Claire who owns and runs Dinky Treats was inspired by her daughter Millie, who lives with #DravetSyndrome !
Do you work in #research ? The Epilepsy Research Institute wants to hear from you!
They're aiming to establish a baseline of current capacity in #epilepsy research, & explore opportunities & barriers to engaging with & undertaking research.
Take part in the survey - epilepsy-institute.org.uk/eri/research/r…
justgiving.com/page/andy-mcki…
I've raised £470 for Dravet Syndrome UK . Come on people! Help me make it #£500 Claire Hanna Doug Beattie Robbie Butler MLA Marcus Rashford Sam Peoples United Peoples TV Ipswich Town Martin J Magill Steve Stockman
🤔 Do you know what’s also important to recognise for #PurpleDay 💜? As part of our podcast with Cassidy Megan we give a mention to those who support people affected by an epilepsy👇!
🎧📹 At 13:17:
“…the epilepsies don’t solely affect people with the diagnosis. So, as part…
For #PurpleDay we share Josie-Mae's story, to join thousands worldwide increasing awareness of #epilepsy ! dravet.org.uk/families/drave…
RT to raise awareness of treatment-resistant epilepsies & challenges faced by those living with #DravetSyndrome & their families, each & every day.
200 amazing adults and children are already registered to complete 5km or 2km #EveryDayinMay4Dravet this year in Tats Ward's phenomenal challenge...
Can you join them? Register for FREE at dravet.org.uk/events/every-d…
#DravetSyndrome #DravetAwareness
Beannachtaí na Féile Pádraig oraibh / Happy St. Patrick's Day!
We hope all of the DSUK Irish families and everyone over at Dravet Syndrome Ireland have a wonderful time celebrating today.
#StPatricksDay #Ireland #Irish
The #DSUKFamilyWeekend offers a;
🤩 relaxed meet & greet
🤩 welcoming coffee morning
🤩 morning of activities JUST for siblings
🤩 fantastic & fun party for all the family
The weekend takes place at Center Parcs, Notts, 14th-17th June.
dravet.org.uk/events/DSUK-fa…
#DravetSyndrome
Well done Juan Antinao Díaz giving a talk on our Gene therapy approach for Dravet syndrome 🧬at Dravet Syndrome Foundation Spain Annual Conference Ellie Chilcott Dravet Syndrome UK LifeArc GOSHCharity UCL-IfWH UCL Translational Research Office
Linzi and Teresa are attending the NHS England North West #Epilepsy Transition to Adulthood Conference today in #Manchester alongside 60 professionals who each have an epilepsy-related role in the NHS.
#DravetSyndrome #DravetAwareness Young Epilepsy Epilepsy Action
We're wishing all who are observing Ramadan, in the Dravet Syndrome community, a peaceful and insightful period of reflection with family and friends.
#Ramadan #Ramadan Mubarak #DravetSyndrome #DravetAwareness
