Dravet Syndrome UK

Do you know someone living with Dravet Syndrome - perhaps a family member or a friend? If so, is their family registered with us? We know there are more children and adults with a Dravet Syndrome diagnosis out there, who aren't yet registered with us, but who could benefit from the comprehensive range of emotional, practical and financial support services we provide to families. Please share our 'Join Us' page with them - https://lnkd.in/daYwaGB for more information! We'd love to provide them with the support they deserve and welcome them to our Dravet Syndrome UK community. #DravetSyndrome #DravetAwareness #Support

An epic thank you to Steve, who completed Tough Mudder in September, raising a brilliant £335 for Dravet Syndrome UK. He was inspired to take on this gruelling challenge by his friend's daughter, 11-month old Tilly, who is living with Dravet Syndrome. He said, "Tough Mudder was one of the hardest I have done for some time! The weather was not kind and made the event extremely sludgy due to the amount of rain the night before... however, saying that, it was great to test myself again and go round with a group of mates." Thank you for being awesome, Steve! #DravetSyndrome #DravetAwareness

*Content Warning - SUDEP (Sudden Unexpected Death in Epilepsy)* Today we’re supporting SUDEP Action Day. Dravet Syndrome brings with it a higher risk of SUDEP than any other epilepsy, yet families affected by the condition are often not aware, or told about SUDEP. That’s why, along with SUDEP Action, we feel it's important to encourage conversations around this difficult topic. Some health and care professionals worry that discussing SUDEP could frighten their patients and their families. But openly discussing the risks, from early on in diagnosis, allows families to take steps to reduce them and make informed choices to help their loved ones stay as safe as possible. There’s tips on our website about how to start a conversation with your medical team about SUDEP here: https://lnkd.in/eXQ2gEAr If you are impacted in any way by this post, please know that support is here for you. Visit www.sudep.org for specialist advice and counselling services. #SUDEPActionDay2024 #DravetSyndrome #DravetAwareness

We are so proud of 10-year-old Mimi, cousin to Dominic who is living with Dravet Syndrome, who successfully cycled over 400km in just four days, from London to Paris last week! After such an inspirational achievement, Mimi said: "I'm really proud of what we have done and how much we have raised for Dravet Syndrome UK to support other families caring for someone living with Dravet Syndrome like my cousin Dominic". So far, this incredible feat has raised over £12,000 for Dravet Syndrome UK, but there's still time to share your congratulations by making a donation at https://lnkd.in/ejEkaZBh Mimi, you're a superstar and we are so very grateful to you for putting yourself through this awesomely epic challenge to raise funds and awareness, helping to support more families like Dominic's, educate more professionals and fund more research. What a truly brilliant cousin you are! Time for a rest now! You can hear about Mimi's cycle challenge by watching her recent interview on Sky News with her Mum Tats: https://lnkd.in/eZXe3iVn #DravetSyndrome #DravetAwareness #L2P4D

Diolch yn fawr to the family of Nia, who have collected £2500 of donations for Dravet Syndrome UK in her memory. Nia is nain (grandmother) to Celyn Mai, who is living with Dravet Syndrome. Nia was a great supporter of DSUK and asked that donations be made in her memory. In 2021 she joined the Dravet 'Yr Wyddfa' climb with her family, helping to raise money through sponsorship. Nia's son Gwion recently took part in the #DSUKvsVelocity Zipworld challenge in their hometown of Bethesda. Thank you to Nia and all her family for their generosity at this sad time. We're thinking of you all. #DravetSyndrome #DravetAwareness

"I would say speak to other people about it, don't be afraid to ask questions and talk about it" - Lee, Dad to Calla-Rose, who lives with Dravet Syndrome. For World Mental Health Day today, we're re-sharing Lee's encouragement to parent/carers, to reach out for support and share how you're feeling with others. https://lnkd.in/emF-x57R If you or someone you know is struggling with mental health, you can find a list of self-referral services at https://bit.ly/DSUKsupport. If you're in crisis, take a look at https://lnkd.in/eGYmPWuj for support. #DravetSyndrome #DravetAwareness #WorldMentalHealthDay #DravetJourneys

Very exciting news for DSUK!

We have some very exciting news that we have received a major funding boost from the Chan Zuckerberg Initiative to accelerate research into Dravet Syndrome. We will receive an amazing $800,000 (approximately £600,000) over five years! This funding grant will enable us to appoint a Chief Scientific Officer (CSO) to develop our research network and drive collaboration between families affected by Dravet Syndrome, scientists and clinicians. The funding grant can’t be used directly to fund research but will put us in an even stronger position as a charity to drive forward further research. A HUGE thank you to all our amazing fundraisers who enable us to continue to fund new research, support more families and make a difference! Find out more: https://lnkd.in/eH9yeePf #DravetResearch #RareAsOne #RareDiseases

Last chance to register for our free, 'The Emotional Impact of Living with Dravet Syndrome' webinar, which takes place tomorrow, Tuesday 8th October from 12pm - 1pm. The webinar will be presented by Dr Anthony Mercier, Clinical Psychologist in the Paediatric Neuropsychology Department at the Royal Hospital for Children in Glasgow. Those of you who took part in our parent/carer focus groups in the early part of 2023 may remember Dr Mercier, who, in this session, will share more on his findings from a paper due to be published in 2024, that explores how parents cope and adjust when parenting someone living with Dravet Syndrome. Parent/carers will come away with validation and recognition of the intense and highly emotional turmoil they feel as individuals, when caring for someone living with Dravet Syndrome. The findings may also provide reassurance, that this research being documented in 'black and white' could also help to inform and improve services and share more publicly the impact of being a caregiver. Sign up now at; https://lnkd.in/ecZ3aAht #DravetSyndrome #DravetAwareness

It'll be all glitz and glamour in Lincoln this evening, for the Dravet Butterfly Ball, organised by Chloe, Mum to Winnie who is living with Dravet Syndrome. With a sparkly drinks reception, three course dinner, entertainment, live music, raffle and auction, for 300(!) attendees, we know how much work has gone into the evening and we're so proud of Chloe for all the dedication and commitment she has shown to organising this event in aid of Dravet Syndrome UK. We hope you all have an incredible time! #DravetSyndrome #DravetAwareness