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Stephen 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.
SUDEP Action
News
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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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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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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.
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.
