SUDEP Action @SudepAction
The only UK charity specialised in supporting and involving people bereaved by epilepsy. 01235 772850 (main) 01235 772852 (support) #SUDEP #Epilepsy sudep.org Wantage, Oxfordshire, UK Joined December 2009-
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Anna Stone sadly died last November. This Saturday evening, a version of the song ‘Over the Rainbow’ which she recorded and sang on will be played between 8.50-9.05pm on: spectrumonair.com #SUDEP #epilepsy
In memory of Kat Buchanan, a group of her family & friends are taking on the Chester Half Marathon to raise money for SUDEP Action. To donate: justgiving.com/page/rachel-mo… #SUDEP #epilepsy #chestermarathon
Good luck to Lauren and George Gosling on Saturday at the Exeter #inflatable5k in memory of Harry Gosling. “We hope we make you proud Harry, like you made us all proud every single day.” To donate: justgiving.com/page/lauren-go… #SUDEP #epilepsy
We’re holding a Glasgow Coffee Club this Saturday, from 10:30am-12:30pm as well as a Grantham Coffee Club on Sunday 5th May from 10am-12pm. Our coffee clubs are a safe space to meet others who know what it is like to be bereaved by #epilepsy 💜 Contact Vicky at [email protected]
“Medicines are the first line of defence against preventable epilepsy deaths, including SUDEP.” See our article in the Welsh Pharmacy Review, P42: waleshealthcare.com/wp-content/upl… #SUDEP #epilepsy #epilepsyawareness
A tremendous well done to @ElaineC09261846 and @NHSMidlands and @1adass for the launch of Clive's Way, in memory of Clive Treacey. Jane Hanna represented SUDEP Action yesterday, highlighting our work: sudep.org/article/nhs-en… #epilepsy #learningdisability
#OnlineEpilepsyMemorialDay 2024 is on May 1st. We hope you will join us over on Facebook on the day, to remember loved ones lost to #epilepsy In the meantime, you can leave a personal tribute on our Dedication Wall tinyurl.com/muprtswr Forever missed, forever remembered 🌸
Thanks to @youngepilepsy for having our Special Projects Coordinator, Ben, and Digital Project Manager, Kezie along yesterday to talk about our important work in death prevention and bereavement support. To learn more about what we do: sudep.org #SUDEP #epilepsy
Thanks to @youngepilepsy for having our Special Projects Coordinator, Ben, and Digital Project Manager, Kezie along yesterday to talk about our important work in death prevention and bereavement support. To learn more about what we do: sudep.org #SUDEP #epilepsy
73% of maternal deaths reported to the EDR were undergoing medical changes at the time of death, with the same percentage of respondents having concerns about medications. 83% of deaths where a cause was listed, were listed as SUDEP. epilepsydeathsregister.org #SUDEP #epilepsy
A terrific well done to Ollie Dixon who completed the #LondonMarathon at the weekend, in loving memory of his sister Rachel, and has raised £1532 for SUDEP Action. #SUDEP #epilepsy
Head over to our Dedication Wall to leave a personal tribute ahead of Online Epilepsy Memorial Day 2024 🌸 Follow the link to leave messages, photos & memories of a loved one lost to #epilepsy: sudepaction.memorypage.org/foreverremembe… Forever missed, forever remembered. #SUDEP #cherryblossom
Do you have questions following an epilepsy-related death? Our support team are here to give counselling, support and guidance in the bereavement process. Call in on 01235 772852 or email us at [email protected] #epilepsy #SUDEP #grief
Have you been bereaved by epilepsy and are yet to tell your story? Every story shared highlights the significance and reality of epilepsy-related deaths. Get in touch at [email protected] #epilepsy #SUDEP #epilepsyawareness
The Nuffield Trust report published today shows we are right to be concerned about the state of medicine supply chains. For people dependent on #epilepsy medicines to control #seizures, we cannot allow shortages to be the new normal. nuffieldtrust.org.uk/news-item/pati…
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Stark statistics around epilepsy/learning disability/autism shared by @SudepAction #clivesway
Without ‘greater openness’ with drug manufacturers, supply chain issues and medicine shortages will put people’s health at risk, @AIMpharmacies @epilepsyaction @epilepsysociety @ParkinsonsUK @SudepAction have warned the government. buff.ly/4cWvu3Q
@SudepAction Thank you 👍
@RADIO_NEIL Hello Neil. I am so sorry you also lost your daughter to SUDEP. Please feel free to use my video in your broadcast. Anything we can do to help prevent deaths, raise awareness and help other bereaved families find support from @SudepAction has to be good 💜
@SudepAction Very true. Unexpectedly came across my sister's death certificate yesterday. It was a "catch your breath" moment, even after 17 years.
An estimated 1 in every 100 Canadians is living with #Epilepsy. Today is #PurpleDay2024, a time to raise awareness about the disorder. In an effort to break down stigmas, women living with Epilepsy share their inspiring stories with @globalnewsto on #EpilepsyAwarenessDay
HAPPY #PurpleDay2024!!! Let’s bring awareness to epilepsy! And heck ya, this is LIGHT purple. 🧠💜
Our Gilbert Scott building is illuminated in purple to show our support for #WorldEpilepsyDay 💜 Purple day aims to raise awareness of epilepsy and reduce the risk of premature death. Learn more: gla.ac/4axh2gL #EpilepsyAwareness #PurpleDay2024
Epilepsy doesn't just affect the person experiencing the seizures, it affects the entire family. Please know you aren't alone, I will advocate for you and with you . #1in100 #canadianepilepsyalliance #PurpleDay #epilepsy #parent #showyourpurple
#purpleday We had a very successful day in creating epilepsy awareness. We don't stop at 26th March, we go beyond. Epilepsy doesn't stop on #epilepsyawareness day
💜 come and say hi 👋 to the adult & paediatric epilepsy nurses this morning. We are opposite the M&S @NCASCOChildrens #purpleday
What an incredible Purple Day it was at Knightsbridge! 💜 We couldn't be prouder to have such a dedicated community....and we've included some fantastic images of the team in action! #purpleDay #EpilepsyAwareness #purple #charity #support
#Epilepsy #PurpleDay 2024 Interesting
Since 2017, Ellie Goodwin has travelled the world as an ESL teacher. Here, in a blog written for SUDEP Action on #PurpleDay2024, she explains what it’s like to travel with #epilepsy – and how the condition is perceived in other countries. Read blog: sudep.org/article/epilep…
@SudepAction @lgoodbu So proud to have Lesley as my sister-in-law, always trying to make a difference for others #sethslegacy
@LorrieForseth @ceaofficialnews @Epilepsy_Center @BCEpilepsy @IBESocialMedia @SudepAction @SUDEPaware @PurpleDay @AnalysisGaa I only heard about it a few years ago. Epilepsy awareness is a good thing, and hopefully, it would make epileptics feel safer going out about their business, knowing people are educated in the first aid.
The lives lost to #SUDEP is heartbreaking, families & friends left devastated by premature preventable deaths. Choices, informed decision & implications matter. Alison’s courage & determination in seeking answers is remarkable. Please share #PurpleDay #Epilepsy #Seizure
@Sp0ngebucket @ceaofficialnews @Epilepsy_Center @BCEpilepsy @IBESocialMedia @SudepAction @SUDEPaware @PurpleDay @AnalysisGaa When I first learned about The Purple Day, Epilepsy Awareness campaign in 2009 , there was no Awareness that I could see , today there is more awareness, we have to keep talking about it . The media isn't blind , it's going to happen . If we reach even one person,it's a start.
@jeelyeater1 @MonicaLennon7 @GreerLinds32575 @SudepAction Thank you @MonicaLennon7, @jeelyeater1 and other campaigners for helping to remind us in @ScotParl to support #PurpleDay2024 and all those affected by #epilepsy.💜
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