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
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.
