Epilepsy Society
@epilepsysociety
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Following
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Transforming lives through advocacy, research & care 💜[email protected] 01494 601 400📞Info- our website
Joined November 2009
On #InternationalEpilepsyDay, we celebrate law-changer, Zach! . Last week we marked #ZachsLaw with Zach meeting.@RishiSunak, @Keir_Starmer and taking photos at.@10DowningStreet. Zach’s Law means people with epilepsy will be safer online - and trolls will be brought to justice.💜
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Thank you @YouTube & @Beyonce for taking action and putting the correct warnings on the #BreakMySoul video. A simple warning like @Beyonce's below could prevent uneccessary harm to people with epilepsy, we urge all artists to think about their content before releasing 💜
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Seizures are no laughing matter for people with #epilepsy @catdeeley. Please do better and educated yourselves about this difficult and poorly understood condition, @thismorning 💜
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It's #PurpleDay! 💜🙌. Thank you to all of the #epilepsy heroes joining us in marking today, whether it's through fundraising or having a conversation with a friend. Please retweet the key statistics below so we can keep the conversation going today and beyond. #PurpleDay2021
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The incredible @peterhook signing out after an amazing auction of his guitars & Joy Division days. Turning music into research for epilepsy💜
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Seizures are no laughing matter for people with epilepsy. People in influential positions must do better and educate themselves about this difficult and poorly understood condition. You can read the full story here: @catdeeley @metroUK @thismorning
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We're pleased to say that Twitter have taken down/suspended the violating tweets and accounts who were posting flashing images and have responded to our reports. We are still in contact with the police about this attack against people with epilepsy.
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Every Christmas, for the last 13 years, 17 year old Angus has had epileptic seizures. However this Christmas, thanks to life-changing laser brain surgery just 11 weeks ago, he is hoping to have his first seizure free Christmas. Read the full story here:
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People with epilepsy are at greater risk of suicide. Joy Division's Ian Curtis who had epilepsy took his own life. Which is why we are so grateful to bassist @PeterHook for supporting people with epilepsy by auctioning his guitars today. #iancurtis #joydivision #epilepsy
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Sign up to receive our free #SeizureFirstAid poster, reminding you on how to be #seizuresavvy and remember Calm, Cushion, Call #NationalEpilepsyWeek.
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We have been targeted by a deliberate malicious post containing flashing imagery. To anyone planning on undertaking a deliberate assault like this against our community DO NOT think that we will not take the action required against you. Your actions WILL NOT be tolerated.
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Purple day 2019 on 26 March is set to be the biggest, greatest and noisiest yet! This year we need you to 'be the conversation starter' and organise #purpleday events that raise vital funds and get people talking about #epilepsy. Order your pack today
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It's Purple Day!. Thousands of people are getting involved today to raise vital funds and raise awareness of epilepsy. If you're one of them, don't forget to share your pics and tag us @epilepsysociety 💜. #GoPurpleForEpilepsy #PurpleDay
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A generous donor will match your gift to help us raise the final £125,000 we need to open our helpline five days a week. Your gift will be matched as long as we receive your donation by 31st December 2019 #HelplineAppeal
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This week is #InvisibleDisabilitiesWeek. Please share this post to raise awareness of #epilepsy as an invisible condition 💜
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Tomorrow is the big day! #PurpleDay is almost here, the day to raise awareness about #epilepsy and raise vital funds. Retweet this message to spread the word and set this picture as your profile picture 💜
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We and a number of our followers have been targeted with flashing images on Twitter with the direct intent to trigger a seizure and cause harm. Below is a snippet of the police report we have submitted. We WILL NOT tolerate this. @Nonprofits @TwitterSupport @Twitter @ThamesVP
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"People who have epilepsy are normal, regular people and they win Olympic medals." Oh yes they do! Huge congratulations to rower Viktoija Senkute who has epilepsy and who won Lithuania's first medal in the Paris Olympics. What a hero and an inspiration. 🏅
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Careless words can help to perpetuate the stigma that is still attached to epilepsy. Our CEO @ClarePelham calls out @camillalong in today’s @thetimes We’d love to talk to you Camilla about just how tough epilepsy can be and how seizures can leave you lost for words.
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It's Purple Day!. There are 630,000 people with epilepsy in the UK. Together, we are stronger. Together, we can Stand Up to Seizures. 💜. #PurpleDay #StandUpToSeizures #EpilepsyAwareness #TeamPurple
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It was a pleasure to work with the team @CallTheMidwife1 @StephenMcGann to advise on how #epilepsy was treated in the 60s. Last night’s #CallTheMidwife showed how far we've come from dark days when it was considered best practice to put a spoon in someone’s mouth during a seizure.
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This is incredibly powerful. Thank you for raising awareness for epilepsy and its many forms and impacts. 💜.
Today is International Epilepsy Day. Sending love and support to everybody in the world with this condition. #InternationalEpilepsyDay #Epilepsy #EpilepsyDay
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If you see someone having a seizure, remember the 3 'C's:. Stay CALM.CUSHION their head.CALL for help. Our aim is to make sure everyone is #seizuresavvy and knows how to support someone with #epilepsy 💜
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Thanks @idriselba. This was a fantastic response to the lady in the audience who had a seizure during your play 'Tree'. We are working hard to raise awareness of how to help someone during a seizure. Your prompt action is a great example. #seizuresavvy
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It's #PurpleDay! Today is the international day for #epilepsy, a day to raise awareness for the condition that brings us all together. Don't forget to tag us on social media so we can see how you went purple today. Let's #StampOutSeizures together. #TeamPurple 💜
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We are deeply saddened to hear that Justin Edinburgh, manager @leytonorientfc has died. Justin hoped to run the London marathon for us in April with his son Charlie. He had to pull out due to injury but helped Charlie raise £5k for us. Our thoughts are with Justin’s family #LOFC.
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Purple Day is an international effort to increase awareness about epilepsy worldwide. Remember Calm, Cushion, Call if someone has a seizure - it could help save a life. #PurpleDay
Today is World Epilepsy Day, also known as Purple Day. Sending love to everyone who has Epilepsy. You are not alone. #PurpleDay #PurpleDay2023 #WorldEpilepsyDay #Epilepsy
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A huge Happy Purple day to all! 💜🥳 We are so grateful to everyone who has helped to get the conversation started about #epilepsy this year and hope you have a wonderful day. You can also help us to raise vital funds to change lives
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Legendary bassist @peterhook is auctioning his guitars & memorabilia from his @joydivision and New Order days & donating some of the proceeds to Epilepsy Society. The auction remembers Joy Division singer Ian Curtis who had #epilepsy. Thank you Hooky!
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A gang of internet trolls are targeting us and our followers, with flashing GIFs to trigger seizures in people with epilepsy. Seizures cause physical injuries & can kill. We need @Twitter to sort this with technology, not just suspend accounts. @Marthalanefox @jessecohn4.
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As high fevers can cause seizures for many people with epilepsy, we'd like to ask why it is the case that these people have not been identified as part of the group with an increased risk of severe illness from coronavirus (COVID-19), of which one of the main symptoms is fever?.
Tomorrow in our first session the Select Committee will be hearing from Yvonne Doyle, Medical Director Public Health England, Chaand Nagpaul of the BMA, Katherine Henderson of the Royal College of Emergency Medicine and possibly others. Any questions you would like asked to them?.
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If you're going to talk about seizures, it'd be more helpful to share our simple first aid advice, Calm, Cushion, Call #ThisMorning 💜. @thismorning @catdeeley
Seizures are no laughing matter for people with #epilepsy @catdeeley. Please do better and educated yourselves about this difficult and poorly understood condition, @thismorning 💜
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#MothersDay is an opportunity for us to recognise the vital role mums play when a child has epilepsy. In this poem, Naomi describes the anxiety and uncertainty of looking after her son who has epilepsy. She hopes it helps other mothers in #TeamPurple feel understood. 💜
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A malicious group of users are posting flashing images in response to our last tweet with the intention to trigger a seizure. Please take care if you're looking at the replies. To those undertaking this attack, WE ARE taking action against you. DO NOT think you will be tolerated.
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⚠️ Please be aware that our Twitter account has been targeted in the last few hours by internet trolls sending flashing images to trigger seizures. Please take care, particularly if you are photosensitive. This is why #ZachsLaw is so important. ⚠️.
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HM King Charles III is Epilepsy Society's new Patron! 💜 . Our CEO @ClarePelham said, "It is a testament to the charity and to people affected by epilepsy that the King has chosen to continue to support a charity which meant much to his mother." . 📸: Asadour Guzelian. (1/3)
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Today is #PurpleDay, the International Day of Epilepsy. Did you know that 1 in 100 people in the UK have epilepsy? Share this infographic to show your support and help people to know what to do if they were to see someone having a seizure. 💜. #StampOutSeizures #epilepsy
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Each year @allontheboard share brilliant messaging around #PurpleDay. This year is no different, this is well worth the read. 💜. #TeamPurple.
Today is International Epilepsy Day. Sending love and support to everybody in the world with this condition. #InternationalEpilepsyDay #Epilepsy #EpilepsyDay #allontheboard
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It's #PurpleDay, an opportunity for the epilepsy community to teach the world about epilepsy. So what's one thing you wish more people knew about epilepsy? 💜. #epilepsy #StampOutSeizures #PurpleDay2024
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Not having to spend all day worrying if you will have a seizure or not.
What is a privilege that people act as if it isn't ???.
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Zach’s Law has now passed! 💜. For over three years, Zach Eagling and the Epilepsy Society have fought for Zach's Law. Today, the journey is over. The Online Safety Bill, including Zach's Law, has passed. At last, the online trolls will be silenced. #ZachsLaw #OnlineSafetyBill
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What a fabulous afternoon, celebrating our patron, the Queen's Platinum Jubilee, with a street party at the Epilepsy Society. Red, white, blue and sunny ☀️@RoyalFamily
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If you see someone having a tonic clonic seizure, remember the 3 'C's:. Stay CALM.CUSHION their head.CALL for help. Our aim is to make sure everyone is #seizuresavvy and knows how to support someone with #epilepsy 💜
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People often appear confused during or after a seizure. Please stay with them while they recover. RT this to help spread #epilepsyawareness
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Three year-old Stefan covered a quarter of a mile on a main road on his Paw Patrol truck after his father, Marc, had a seizure at home. What a brave little boy trying to help his dad, and we are so glad to read that everyone is safe. @BBCNews.
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It's National Epilepsy Week! 💜. We're proud to be part of this group of brilliant organisations, working hard to improve the lives of people with epilepsy.
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We are today calling for the NHS to provide free dental repairs to teeth damaged by seizures. This comes as new data reveals that a staggering 58 per cent of people with epilepsy faced dental repair costs they could not afford. 💜. It’s time to #FixIt4Free
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People with no experience of epilepsy often think it's 'just' seizures. We know that's not true. Our latest project aims to raise awareness of what epilepsy is really like and teach them all about the various struggles people with epilepsy face. 💜
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This #InvisibleDisabilitiesWeek we are reminded of the impact that invisible conditions, like #epilepsy, can have on a person's life, from fear and isolation to potentially not being able to drive or carry out some daily activities. Please RT this image to raise awareness.
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As a tribute to the anniversary of Ian Curtis' death who had #epilepsy,.@peterhook and The Light are streaming their concert of the @joydivision catalogue, #SoThisIsPermanent, for 24 hours on 18/5/20 on YouTube in aid of Epilepsy Society 💜
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Sending purple pumpkin love to everyone affected by #epilepsy this #Halloween weekend - we hope you are able to enjoy the celebrations safely 💜🎃. (thank you to our Instagram follower for the epic End Epilepsy pumpkin pic!)
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Today is #WorldEmojiDay and we would love to get the purple heart trending in solidarity with everyone affected by #epilepsy across the globe 💜 Can you help us by retweeting and tweeting your own 💜?
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We've just been informed that Amelia Robert's parents Debbie and Hamish will be on @itvnews tonight talking about the incredible story of how @hari_miller 's tweet about Amelia went viral and raised over £30k for Epilepsy Society's research.
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#InternationalEpilepsyDay is a global initiative dedicated to increasing awareness and understanding of epilepsy. The day serves as a platform to educate people, dispel myths, and address the stigma associated with this neurological condition. #TeamPurple 💜
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We are really excited to share comedian @LittleLostLad Jake Lambert's story about his epilepsy and not wanting to be branded 'epileptic'. "Epilepsy is something I have, not something I am. I have a Ford Focus but I’m not a Ford Focus.” Seriously funny 🤣.
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Young girl with epilepsy goes on impromptu shopping spree with Duchess of Cambridge.
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When Chris McCarthy had a seizure at 17 it crashed his dreams of becoming a Formula 1 racing diver. He refused to be left in the pits by his epilepsy and is now a national and international commentator for motor racing. Catch him this weekend at the #AusGP. #StampoutSeizures
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Today is #InternationalNursesDay 💜. We want to say a huge thank you all Epilepsy Specialist Nurses. They work incredibly hard alongside neurologists and GPs to ensure people with epilepsy are getting the best care possible!
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35 years ago to this day Princess Diana visited Epilepsy Society!. A lot has changed since then, but one thing has remained constant, and that's our never ending commitment to transforming the lives of people with epilepsy in the UK. 💜
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Epilepsy Society will be undertaking #48HoursSilence on Twitter in support of a boycott highlighting the platform's inadequate response to the transmission of offensive material. This follows our ongoing experience with trolls targeting people with epilepsy with flashing GIFs.
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We would like to thank everyone in our #TeamPurple community for sharing their feelings over @ITV's inappropriate comments on @thismorning earlier this week. We have offered to provide epilepsy training to raise awareness and avoid avoid incidents like this in the future. 💜
Seizures are no laughing matter for people with #epilepsy @catdeeley. Please do better and educated yourselves about this difficult and poorly understood condition, @thismorning 💜
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It’s Marathon Day! 🎉🏃♂️ . Good luck to our 66 #TeamPurple runners who are taking part in the 2023 TCS London Marathon - with a special shout-out to our fancy dress runner Allison! . Everyone on the team has dedicated hundreds of hours to train for today’s iconic event 💜
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While sudden death in epilepsy is rare, It can be a constant worry for families who fear that their loved ones may be at risk. Do you think it's something that we should talk about more? 💜
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THANK YOU to legend @peterhook & his equally legendary fans for their incredible support through #SoThisIsPermanent. We've nearly hit our £10,000 goal! 💜Help us turn Ian Curtis’s legacy into support for people with #epilepsy & depression by donating at
#SoThisIsPermanent - our 2015 anniversary concert film - is streaming NOW for 24 hours only. Watch on:. Youtube - Facebook - Please consider a donation to the @epilepsysociety via our @JustGiving page -
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We were sent this piece of artwork from a student on the Level 3 Fine Art course at @whertscollege The work is a drypoint etching of a poem the student wrote on how to deal with someone who is having a seizure.
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As a tribute to the anniversary of Ian Curtis' death who had #epilepsy, @peterhook and The Light are streaming their concert of the @joydivision catalogue, #SoThisIsPermanent, for 24 hours on 18/5/20 on YouTube in aid of Epilepsy Society 💜
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Wishing everyone affected by epilepsy a happy and peaceful start to 2022 and all the best for this coming year. Remember, you are not alone 💜💫🎆. #epilepsy #epilepsysupport #newyear #2022
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"I want people to know epilepsy is more than just seizures, it's the injuries, it's the feeling of lousiness after, lousy at yourself and feeling like I've disappointed my family even though I know it isn't my fault." Thank you @dan_batemannn 💜.
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Amy is a university student with epilepsy. We'd like to wish Amy, and anyone else heading off to higher education the best of luck, and remind you that we are here to support you during this exciting, and sometimes nervous, time. 💜
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We are absolutely overwhelmed by this total of £20,951! 😮💜 Thank you so much to every person who donated to us through the @peterhook #SoThisIsPermanent concert in memory of Ian Curtis. Every donation helps to ensure our vital work supporting people with #epilepsy can continue.
Thanks to everyone who watched #SoThisIsPermanent over the last 48 hours. And a special thanks to all those who donated - £20,951 raised for the @epilepsysociety!. Stream is now over, but you can order the DVD, CD or download now via @LHN_Recording at
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Today is #NationalLoveYourPetDay . Did you know that even untrained dogs can tell when someone is about to have a seizure? . Tag us in your pictures, or tell us about and share photos of your pets in the comments below! 🐶💜. Don't forget to give them extra treats😉. #epilepsy
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What a way to wrap up a campaign. Thanks @thismorning for inviting Zach and mum @Claire_Keer to talk about Zach's Law - a landmark victory for people with epilepsy!. And thanks to @LiverpoolFC @curtisjr_10 for your support and inviting Zach for a tour!💜. @hollywills @benshephard
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People with epilepsy are now entitled to a free flu vaccine following our successful campaign to have them included in the programme. Thank you to all who filled in our seizures and fever survey. Your voices made the difference.@CherylGillan @DHSCgovuk
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Police “utterly condemn” targeting of people with epilepsy and say they are investigating the tweets as a hate incident under the Malicious Communications Act.
Malicious tweets targeting epilepsy charity trigger seizures
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On hottest day, we are on London Underground talking to @TfL staff about how to help passengers if they have a seizure. First stop Bond St.
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This is a difficult time for everyone, but it can be especially difficult for people who are already isolated including some people with epilepsy. Please share some words of support to people with #epilepsy. Retweet and #ShareThePurpleHeart 💜
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Ellie's #Christmas wish is for us to raise vital funds for our pioneering research into finding a cure for #epilepsy. Donate now #jgchristmas #ElliesXmasWish What is your Christmas wish?
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Natasha walked 10,000 steps every day of September to raise money for epilepsy!. Over the month she raised a fantastic £310 and raised lots of awareness for epilepsy by posting about her fundraiser on social media. Thank you Natasha! 💜. #TeamPurple #epilepsy #epilepsyawareness
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Happy #PurpleDay everyone! Retweet to show your support for people living with #epilepsy. Text PDAY26 £1 to 70070 to donate a Purple Pound to help raise vital funds for our research and help us be there for people who are newly diagnosed 💜 #PurpleDay2018
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Zach's Law is a major milestone for people with epilepsy. It's the first time epilepsy has been mentioned in legislation anywhere in the world. We couldn't have done it without your support! 💜.
I am proud to celebrate securing #ZachsLaw. I sat on the @OnlineSafetyCom & ensured this item was top of the agenda. I would like to pay tribute to Zach, his mum, @Q66Suzi, @Daily_Express, colleagues & @epilepsysociety. Read the full story on my website
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'I had epilepsy. Within the space of a minute, I had a disability.'. @LarissaAHurt thank you for bravely sharing your story with epilepsy. What a wonderful piece of work 💜. You can read her full story here: #epilepsy.
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Here's a handful of the more than 130 photos we've been sent across social media on Jodie's #DoILookEpileptic hashtag. We'd love to see your photo if you haven't yet sent one in! Please note by sending us your photo we may use it across social media and other offline platforms 💜
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If you had a seizure and broke a limb, the NHS would fix it. But what about if you lost a tooth?. You can read the story in the Mirror, and sign the petition to #FixIt4Free here:
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Let's remind everyone this #PurpleDay that epilepsy is far more than just seizures! 💜. #epilepsy #PurpleDay #epilepsyawareness
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Thank you to BBC One's Morning Live, who raised awareness for epilepsy earlier this week. Remember, if you see someone having a seizure: Calm, Cushion, Call. You can watch the full segment here: @HelenSkelton @BBCMorningLive
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A big shout out for all the amazing mums who get on with the job in spite of their epilepsy 💐. Or who are the rock for children and loved ones with epilepsy 🌺. You are all truly inspirational. 💜💜💜.
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Monday, 18/5 marks the 40th anniversary of the death of Joy Division's Ian Curtis, who lived with epilepsy. Band mate, Peter Hook, will be streaming a special concert, #SoThisIsPermanent, for free with donations to Epilepsy Society. Find out more here.
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We are so proud of Zach! . Zach's Law represents a huge win for people with epilepsy, it's the first time epilepsy has been mentioned in legislation anywhere in the world! 💜💪. #epilepsy #zachslaw #OnlineSafetyBill.
A new law has been named after 12-year-old Zach to safeguard people with epilepsy from online trolling. Zach’s law means anyone who posts flashing images with intent to trigger a seizure could face a five-year prison sentence. @BBCLookNorth #zachslaw
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After over 2 years of campaigning from Zach, his mum and the Epilepsy Society, this was the moment @scullyp officially announced Zach's Law WILL become law. He went on to say: "the deeply pernicious activity of epilepsy trolling will be punishable by law". A moment of history!
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Here's your 24 hours' notice to tune into BBC One tomorrow at 2.05pm to watch our BBC Lifeline Appeal with Edith Bowman. The film will allow people all across the country to understand epilepsy better, and the life-changing work that Epilepsy Society does. 💜
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Thank you to every single carer helping to support someone with epilepsy. You are amazing! 💜
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People with epilepsy risk breakthrough seizures if they don’t have a continuous supply of medication. We will keep holding the government to account until they take action to end this unnecessary crisis. 💜
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