@SudepAction

Dedicated to raising awareness of epilepsy risks & tackling all #epilepsy deaths including #SUDEP Get in contact: [email protected]

 Wantage, Oxfordshire
sudep.org/
Joined December 2009
  • Tweets14.4K
  • Following1.8K
  • Followers6.2K
5.6KMedia
Raising awareness continues even after SUDEP Action Day! You can still get involved by continuing to share our messages or seeing how you can fundraise and raise #EpilepsyAwareness: sudep.org/how-you-can-fundra… #SUDEP #Epilepsy #Fundraising
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We’ve launched a petition to address the promises made by government to work with SUDEP Action and families to tackle SUDEP and epilepsy risk to prevent future deaths. If you’ve been affected by SUDEP, could you stand with us? Sign here: sudep.org/sign-our-petition/
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Congratulations to the friends of Jacob Sunley who raised an incredible £5,375 from running the Henley Half Marathon last week. "We are all so happy with what we have achieved in memory of our boy." - Hugo Domingos Jacob Sunley was only 20 when he died from #SUDEP
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Read the article: henleystandard.co.uk/news/ch… Read Jacob's My Story: sudep.org/stories/jacob/ #SUDEP #Epilepsy #EpilepsyAwareness

Friends raise thousands for epilepsy charity in memory of Jacob Sunley

A group of friends have raised more than £5,000 for an epilepsy charity by running the Henley Half Marathon.

henleystandard.co.uk
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The Epilepsy Deaths Register offers grieving families a meaningful way to honour their loved ones by directly contributing to research that can protect others: epilepsydeathsregister.org/ Please share this post so that others may contribute to this vital research for #SUDEPActionDay
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"There is still so much stigma around epilepsy, globally, and within the UK. Our voices aren't heard... its a fight to get them heard." (Policy Champion, Kristi McDonald) Sign our petition to the Prime Minister: sudep.org/sign-our-petition/ #SUDEPActionDay #StopSUDEP #Epilepsy
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Thank you to everyone for getting involved in SUDEP Action Day this year! 🧡 Everyone who has taken part this year has helped create lasting change in the fight to #StopSUDEP. We hope to have your support again next year. #SUDEP #epilepsy #epilepsyawareness
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"I'm a mum, a campaigner and a policy champion for SUDEP Action." (SUDEP Action Policy Champion, Marie James) Sign our petition to the Prime Minister: sudep.org/sign-our-petition/ #SUDEPActionDay #StopSUDEP #SUDEP #Epilepsy
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"Action must follow to bring epilepsy and its risks out of the shadows and to the forefront of care." Decades of reports have found systemic failure when its come to people living with #epilepsy and learning disabilities: sudep.org/action-needed-to-b… #SUDEPActionDay #SUDEP
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Take action for your patients with epilepsy and download the SUDEP & Seizure Safety Checklist for #SUDEPActionDay This Checklist, available for both adults and children, is a structured tool to help assist you in discussing #SUDEP risk factors: sudep.org/sudep-and-seizure-… #Epilepsy
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Latest Purple Chorus podcast: CEO Sammy Ashby & @w_stoker discuss “Why Didn’t My Neurologist Tell Me About SUDEP?” & epilepsy risks. Watch the full video: youtu.be/t2VHN6UKU_c?si=Bwby… #SUDEP #EpilepsyAwareness #SUDEPActionDay
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Do something amazing for #SUDEPActionDay - sign up or donate to #MyWayto5K! 🏃‍♀️ Every 5K & donation raises vital awareness of epilepsy & SUDEP. People that take part share their story and experience of SUDEP – could you do the same? Donate or sign up: tinyurl.com/MWT5K2026
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Did you know SUDEP accounts for about 50% of epilepsy-related deaths? 💜 This #SUDEPActionDay, help us save lives. Your donation funds critical research, safety education and support for grieving families. Donate now: sudep.org/donate #EpilepsyAwareness
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How does sharing risk messages differ in the UK and the US? Hear from CEO Sammy Ashby and Alison Kukla from PAME (Partners Against Mortality in Epilepsy) about talking about SUDEP and empowering people with epilepsy. Watch here: youtu.be/sygS_U8Ut9k #SUDEPActionDay
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Meet EpSMon. Your own personal #epilepsy record. Our award-winning app will help you keep track, providing key info for both you and your epilepsy health professional. Just search “EpSMon” on the App Store. Learn more: sudep.org/epsmon-app 📲 #SUDEPActionDay #Seizures
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“Jacob was just 20 when he died. He was an outgoing, intelligent, kind and beautiful young man. He loved his life and would always strive to make the best of every situation including his epilepsy diagnosis.” Read Jacob’s My Story: sudep.org/stories/jacob/ #SUDEPActionDay #SUDEP
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Tanya Sunley is a SUDEP Action Policy Champion who supports the signing of the charity’s petition: sudep.org/sign-our-petition/ #Justice

Sign our petition to the Prime Minister - SUDEP Action

We’re launching a petition to address the promises made by government to work with SUDEP Action and families to tackle SUDEP and epilepsy risk to prevent future deaths.

sudep.org
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Tanya Sunley is a SUDEP Action Policy Champion who supports the signing of the charity’s petition: sudep.org/sign-our-petition/ #Justice

Sign our petition to the Prime Minister - SUDEP Action

We’re launching a petition to address the promises made by government to work with SUDEP Action and families to tackle SUDEP and epilepsy risk to prevent future deaths.

sudep.org
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"I'm an active policy champion for SUDEP Action because of my brother, Clive Treacey." (Policy Champion, Elaine Clarke @ElaineC09261846) We need your voice to call on the Prime Minister to act on the pledges made to prevent future deaths: sudep.org/sign-our-petition/ #SUDEPActionDay
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As healthcare professionals, initiating open conversations about #seizuresafety and #SUDEP risk management can save lives. For #SUDEPActionDay, download our free 'What is SUDEP?’ leaflet to help your patients: sudep.org/leaflets-downloads… Let’s #StopSUDEP together. 💜
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