Dedicated to raising awareness of epilepsy risks & tackling all #epilepsy deaths including #SUDEP Get in contact: [email protected]
Wantage, Oxfordshire
Joined December 2009
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We need your voice to reach 10,000 signatures!
The government promised to work with SUDEP Action and families to tackle epilepsy risk and prevent future deaths. Help us make sure those promises are kept.
🔗 Sign & share now: sudep.org/sign-our-petition/
#Justice
Our coffee clubs are to offer mutual support and remind families and friends they are not alone. Whether you’re newly bereaved or have been navigating grief for years, you’re welcome at one of our coffee club meetings.
Learn more: sudep.org/coffee-club-meetin…
#SUDEP #Coffee #Grief
A huge thank you to everyone who has taken part in My Way to 5K this year! 🏃♀️
Your incredible efforts have raised £6,776.50!
Every donation has helped to raise vital awareness of epilepsy risks and Sudden Unexpected Death in Epilepsy (SUDEP).
#SUDEPActionDay #MyWayto5K
We need your support to reach our 10K signatures target!
Our petition addresses the promises made by government to work with SUDEP Action and families to tackle SUDEP and epilepsy risk to prevent future deaths: sudep.org/sign-our-petition/
Please sign and share this post 💜
This story in The Metro highlights the importance of always talking to health professionals for specific advice relating to YOUR epilepsy and how to manage it. Disinformation and not sharing evidence-based info on SUDEP and epilepsy risks can kill.
Woman, 31, found dead after ChatGPT ‘convinced her’ to roll back medication trib.al/2bnfMil
Our EpSMon app can help you keep track of changes in your condition, providing useful information for your doctor, whilst the SUDEP & Seizure Safety Checklist is designed to ensure important human conversations take place in clinical settings.
#SUDEP
There are only a few days left of #MyWayto5K!
If you want to make an impact, there is still time: tinyurl.com/MWT5K2026
Every 5K and every donation helps to empower families and individuals living with epilepsy across the country.
#SUDEP #Epilepsy #EpilepsyAwareness
Sign our petition to the Prime Minister to urge the new Government to honour the promises made to SUDEP Action and our bereaved families.
Stand with us: sudep.org/sign-our-petition/
Please share widely so we can continue the fight to #StopSUDEP together after #SUDEPActionDay.
Missed #SUDEPActionDay 2026?
This year, #StopSUDEP had a global reach of over 100 epilepsy organisations alongside hundreds of individuals who helped us spread awareness of Sudden Unexpected Death in Epilepsy.
#SUDEP #Epilepsy #EpilepsyAwareness
We have already raised over £5,000 through My Way to 5K this year – have you donated yet?
Every donation and every challenge is funding life-saving research into #SUDEP (Sudden Unexpected Death in Epilepsy) and epilepsy-related deaths.
Support our work: tinyurl.com/MWT5K2026
Run the Brighton Marathon 2027 for SUDEP Action! 🏃
Race along the seafront while raising #EpilepsyAwareness and vital funds to prevent epilepsy-related deaths.
The deadline is 30th Oct so sign up today: runforcharity.com/charity-re…
#SUDEP #BrightonMarathon #Brighton
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
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/
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
Read the article: henleystandard.co.uk/news/ch…
Read Jacob's My Story: sudep.org/stories/jacob/
#SUDEP #Epilepsy #EpilepsyAwareness
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
"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
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
"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