Find out more about SUDEP
Watch this short YouTube video to find out about the support efforts seeking to raise awareness of SUDEP (Sudden Unexpected Death in Epilepsy).
Find out more about equipment
There are so many different monitors and alarms available for people living with epilepsy. We have added a link to epilepsy.org who have produced comprehensive information on their website. Take a look to find which works best for you
New Partnership with UK’s Largest Provider
We’ve partnered with Epilepsy Alarms, the UK’s largest provider of epilepsy monitoring devices that are designed to give peace of mind to young people with epilepsy and their families. Take a look at the wide range of devices they have to offer and then get in touch with us to discuss whether we can help with funding your purchase.
Presenting Jon Shaw Foundation and SUDEP
We put this presentation together to introduce the topic of SUDEP to the wider audience, as per our third charitable purpose. We have also adapted a version for presenting to primary schools.
Invesigating the underlying mechanisms of SUDEP…
Epileptic seizures can stop a person’s breathing or the heart from beating. This is believed to be the basis of sudden unexpected death in epilepsy (SUDEP). SUDEP is both untreatable and unpredictable, and accounts for approximately 600 deaths each year in the UK.
The underlying mechanisms of cardiorespiratory arrest is unknown, but increasing evidence implicates a type of brain cell – the microglia – in this process. However, it is not clear whether these cells cause or prevent seizures associated with SUDEP.
The StudyProfessor Dale and Dr Bhandare at the University of Warwick are using highly advanced head mounted mini-cameras to image cardiorespiratory brainstem neurons in animal models of epilepsy. Their expertise will allow them to address the role of microglia in SUDEP by imaging cardiorespiratory neurons, manipulating microglia and simultaneously measuring epileptic seizures. They hope to be able to prevent the failure of cardiorespiratory neuronal networks during seizures through altering microglial activity.
SignificanceThe findings will establish the functional changes in specific cardiorespiratory cells in response to acute seizures, and how their role changes during the development of chronic epilepsy. This project will demonstrate the importance of microglia in regulating cardiorespiratory function in epilepsy, and will increase understanding of the mechanisms underlying SUDEP. The findings of this study could also provide biomarker tests for people with epilepsy who are at a higher risk of SUDEP. The knowledge gained in this project may lead to a potential therapeutic intervention for SUDEP based around an existing drug known to affect microglia (minocycline)
A Guide for Schools…
Young Epilepsy have tweeted a guide for schools to support young people with epilepsy. Click the button below to view it.
Further Information on Epilepsy for Young People…
The Epilepsy Space is for 16-25 year olds to help you manage your epilepsy. It was created with young people. You can find information about, medical issues, independance, family and relationships, emotions and wellbeing, sex, hormones and parenthood