Campaigns
Motion in Scottish Parliament to acknowledge SUDEP Action Day
MSP Monica Lennon lodges motion to recognise SUDEP Action Day
SUDEP Action
News
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CampaignsTen barriers SUDEP Action has broken down since 1995
Jane Hanna OBE identifies the top 10 barriers that SUDEP Action has fought since it was founded in 1995.
CampaignsShoelaces: A personal story of loss and perseverance
Roy Grimes has written a book of his experiences called Shoelaces following the death of his brother Nathan.
GeneralOmbudsman says health board failed vulnerable epilepsy patients
A complaint brought by seven families – who had been using a specialist service that stopped abruptly in June 2021 – has been upheld by the Ombudsman.
Fundraising“Never give up!” 3 x 3 peaks climbed in memory of Martin
Group climbs to the summit of all nine mountains in memory of Martin Morgan.
GeneralOur Coffee Clubs: A safe space for bereaved families
You’re welcome at the Coffee Club by our SUDEP Action team and volunteers.
CampaignsArtist Rachel brings colour to our 30 for 30 challenge
Trustee Rachel Shah is taking on the 30 for 30 challenge
Campaigns30 for 30 the Interim CEO’s perspective
Dan Freshwater explains why he is taking part in a 30 for 30 challenge
GeneralWhy I am donating regularly to SUDEP Action
“The short answer for why I am donating regularly and why I have helped raise over 7k for SUDEP Action is because the day after my wife, Sarah, died was the first time I heard of SUDEP.”
GeneralExciting opportunity launched for new research project
Applications invited for research award of up to £300k over one to four years.
FundraisingSnowdon climb in memory of Jasmine MacArthur
Jasmine MacArthur died due to epilepsy in March at just 16 years old.
FundraisingDaughter of former Trustee runs the London Marathon in memory of her sister
Kristen passed away in 1999 at the age of 25 and was eight months pregnant
FundraisingNine peaks in memory of Martin Morgan
Martin had been diagnosed with epilepsy when he was around 8 years old and hadn’t had a known seizure for 15 years before he passed away.
Campaigns‘New Charlie Cards will save lives’ says Charlie’s Mother
Charlie’s mother; Henrietta Hastings, and the coroner, say the systems in place, which were meant to protect her son, failed him.
General‘Together, as a movement, we were hard to ignore’
Catherine and Chris’s son Matthew died suddenly and unexpectedly in November 1991. He was just 21 and apart from having epilepsy, otherwise fit and healthy.
GeneralNew publication identifies priorities for SUDEP research
SUDEP Action has contributed to a new research paper published in Epilepsy & Behavior.
GeneralWhy SUDEP Action matters to me
Patricia Odd shares her experience of finding SUDEP Action after losing her daughter Katy.
General2002: How we took epilepsy deaths out of the shadows
Still widely cited and used today, the National Sentinel Clinical Audit of Epilepsy-Related Deaths found systemwide failures in the provision of epilepsy care.
EventsSUDEP Action remembers those who have lost their lives to epilepsy with London Memorial Service
The service was attended by over 200 people who travelled from all parts of the UK to remember and pay tribute to their loved ones.
FundraisingRunning the London Marathon in memory of Charlotte Iceton
“I’ve never been involved in anything like that. You know, everyone just supporting you.”
General1995: How we made political leaders listen
General“People make all of the difference, it’s very caring here”
Paul Marcham, Finance Manager retires after 8 years at SUDEP Action
GeneralSUDEP Action at 30: It began with five women wanting answers
GeneralWorld-leading epilepsy specialist becomes SUDEP Action trustee
SUDEP Action is delighted to welcome Professor Ley Sander as a new charity trustee renowned as one of the top epilepsy specialists in the world.
CampaignsOxfordshire MPs support SUDEP Action on Purple Day
The Oxfordshire MPs supporting SUDEP Action are also campaigning to improve services in the county to help families and clinicians.
CampaignsTower lights up for woman whose death saved eight lives
On Wednesday, March 26, just over two years after she died, Jessica’s parents have arranged for Blackpool Tower to be lit up in purple in her memory.
General‘Great examples of brilliance’
Professor Mike Kerr is now a Vice President of the charity, having recently stepped down as a Trustee,
GeneralStephen Brown: A true SUDEP Action champion
Stephen has now stepped down as a trustee but will continue to serve SUDEP Action as a vice-president.
General40+ MPs sign letter to Health Sec to end meds shortages
MPs call on Health Sec Wes Streeting to end the misery endured by epilepsy sufferers due to struggles in getting life-saving medications.
GeneralNational medicines system must prioritise those at risk of sudden death
By Jane Hanna OBE, SUDEP Action Director of Policy & Influencing
General‘We could not have coped with the awful inquest process alone’
SUDEP Action is continuing to work with the family of Charlie Marriage, who died from SUDEP in June 2021 after spending two days trying to get his anti-seizure medication via NHS 111, his health centre and local pharmacy.
GeneralBereaved mother says NHS111 still putting lives at risk
His mother Henrietta says the systems in place – meant to protect her son – failed him. She believes there are still major problems with NHS111, which are putting the lives of others at risk.
TeamSUDEP Action delighted to welcome Dan as Interim CEO
Dan joins the team as cover for Sammy Ashby, who will go on maternity leave in February.
GeneralLight Up the Sky in memory of your loved one
“It is often in the darkest skies that we see the brightest stars.” – Richard Evans
GeneralNorth Thames Paediatric Network sign up for the Children’s Checklist
North Thames Paediatric Network sign up to the Paediatric SUDEP and Seizure Safety Checklist.
GeneralSupport our Big Give Christmas Challenge
This year, SUDEP Action has been accepted to be part of The Big Give Christmas Challenge, a match-funding initiative where your contribution can make double the difference!
GeneralFailing policies are failing people with epilepsy
A blog by Jane Hanna OBE, SUDEP Action Director of Policy & Influencing
GeneralBenFest in memory of Ben Exley
A village festival to commemorate Ben’s 30th birthday.
GeneralEpilepsy in the workplace
Ellie Goodwin gives a run down of managing epilepsy in the office
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General
SUDEP Action welcomes NICE Appeal decision on new anti-seizure medication
Hope renewed for use of anti-seizure medication for patients with Lennox-Gastaut Syndrome
GeneralGlimmer of hope – but actions needed
SUDEP Action CEO Sammy Ashby on the Government’s new 10-year plan for change.
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General
Epilepsy and dating
Ellie Goodwin gives us a quick tour of dating as someone with epilepsy.
GeneralOur CEO; Sammy Ashby on SUDEP Action Day
We could not have predicted how this day would grow into the global event it is today, supported and embraced by epilepsy organisations all over the world.
GeneralDo a My Way to 5K your own way
The My Way to 5K challenge takes place annually between 1st October – 20th alongside SUDEP Action Day on Wednesday 16th October 2024.
GeneralInquest rules Joshua died of SUDEP with epilepsy undiagnosed
An inquest has ruled that Joshua Owen died of SUDEP, even though his epilepsy was never diagnosed.
GeneralNew MHRA guidance increases risk for people with epilepsy
We believe the lack of MHRA transparency and consultation on the Prevent Programme is outside the range of reasonable and acceptable.
GeneralNew research: The impact of Covid-19 on people with epilepsy
SUDEP Action has contributed to a new research paper on the impacts of Covid-19 on people with epilepsy.
GeneralApplications open for SUDEP Action Fellowship
Exciting new research partnership announced with Epilepsy Research Institute (ERI).
GeneralCoalition of orgs ask for urgent meeting with new Health Secretary
SUDEP Action has put its name to a letter urging Wes Streeting to meet to discuss critical medicine supply issues.
GeneralFamily believe Charlie should still be alive today
The inquest into the death of Charlie Marriage will take place from June 24-28 at Inner London South Coroners Court, Southwark.
GeneralPressure on party leaders to fix medicine shortages
SUDEP Action is continuing to work with Epilepsy Society, Epilepsy Action and Parkinson’s UK to improve access to life-saving medicines.
General‘Bella would be so proud’
SUDEP Action supporter Colin Eveleigh will have a work displayed at The Royal Academy’s Summer Exhibition in July and August.
GeneralNew study: More risk discussions needed with patients
Research compares views of epilepsy professionals in the UK and Norway: Despite international guidance, SUDEP-related discussions are still not consistently taking place.
GeneralWe all need to ‘be more Hannah’
A family is urging each other to ‘be more Hannah’ in memory of Hannah Smith, who died last year from SUDEP.
GeneralOur Help for Hope pledge – ask your MP!
If elected, I will meet with SUDEP Action to talk about rising preventable deaths and harms to people with epilepsy.
GeneralPurple hearts for SMPs & Glasgow Uni to be lit purple!
Jessica Johnston died suddenly and unexpectedly from epilepsy in January 2022, just 20 years old.
GeneralAnne’s Great South Run triumph
For six years, Anne O’Neill has completed the Great South Run in memory of her sister Brigid who sadly suffered a fatal epileptic seizure in November 2001.
GeneralNew project to reduce epilepsy risk in Ireland
SUDEP Action has begun work with Epilepsy Ireland to introduce the SUDEP and Seizure Safety Checklist to Ireland.
GeneralSudden Child Deaths: The Search for Answers
SUDEP Action was disappointed with aspects of the BBC Panorama programme Sudden Child Deaths: The Search for Answers.
GeneralPeople with epilepsy deserve better access to medicines
SUDEP Action is calling for more to be done to ensure people with epilepsy have better access to lifesaving medicines.
GeneralNHS England-funded project is lasting legacy to Clive
Guidance designed to reduce the epilepsy risks faced by people with learning disabilities has been launched by NHS England and SUDEP Action.
GeneralA mother’s perspective, by journalist Caroline Scott
My 21-year-old son Rupert had constant tonic clonic face-smashing seizures for over three years before a combination of drugs – different team at another hospital – helped get them under control last year.
General‘My Safety Matters’ is an important theme for now
My Safety Matters’ is central to SUDEP prevention. Safety matters because we care for life.
GeneralFrom our CEO – Sammy Ashby
As the ninth SUDEP Action Day approaches, my first as CEO, I’m both excited and anxious to see how organisations worldwide get involved.
GeneralFamily answers SOS to keep Brett’s journey going
The family of Brett Saunders are helping him complete his John O’Groats to Land’s End challenge, after injury disrupted his plans to run the 805-mile route solo.
NewsJane Hanna, in conversation with Angela Walker
Former BBC journalist Angela Walker spoke in depth to Jane Hanna recently as part of her new podcast with inspirational people.
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Team
Our new CEO – Sammy Ashby
Sammy Ashby is the new CEO of SUDEP Action following Jane Hanna’s decision to step down from the role.
TeamJane Hanna stepping down as CEO
Jane Hanna is stepping down as CEO of SUDEP Action from July 31.
GeneralBrett to run from John O’Groats to Land’s End
Sussex man Brett Saunders is running the length of Britain from John O’Groats to Land’s End, despite considering himself an ‘inexperienced runner’.
UpdatesCoalition statement on the use of Sodium Valproate
A coalition of 11 UK epilepsy organisations recently met with representatives of the Medicines & Healthcare products Regulatory Agency (MHRA).
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.
