More seizures, more stress and appointments being cancelled are among the challenges faced by young people with epilepsy during the pandemic, Young Epilepsy has found.
ONE TEAM, ONE DREAM!
Today, Young Epilepsy and Epilepsy Research UK are delighted to announce the launch of our first joint venture - a £300,000 Fellowship Award for research into childhood epilepsy.
Childhood epilepsies are associated with significant additional conditions which, over the course of someone’s life, can have a much greater impact than seizures. Seizures are often the most obvious, or extreme symptom of the underlying cause of someone’s epilepsy, but they are rarely the only symptom. Additional conditions of childhood epilepsy include ADHD, autism, learning difficulties, motor difficulties, behavioural difficulties and mental health/emotional difficulties. Anti-seizure medications only go so far when seizures are not the only thing someone is facing.
Young Epilepsy has been coordinating research with UCL and Great Ormond Street Hospital under the leadership of The Prince of Wales’s Chair of Childhood Epilepsy, Professor Helen Cross OBE, for over 15 years. We are passionate about understanding the causes, impacts and treatment of childhood epilepsy in order to drive early diagnosis and intervention for every aspect of someone’s epilepsy. We know the earlier you can treat successfully, the better the outcome.
Epilepsy Research UK’s vision is ‘a life free from epilepsy’. They have raised and invested over £2million into epilepsy in childhood, and over £10million to all epilepsy in the UK. Their mission is to drive and enable life changing, lifesaving research into epilepsy.
Both organisations are thrilled to be working together to offer this support for research into the causes, diagnosis and treatment of childhood epilepsies. We have kept the criteria very open in order to maximise the breadth of opportunity in this field and we are sincerely looking forward to receiving applications.
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Applications opened last week for the first-ever Epilepsy Research UK & Young Epilepsy Fellowship Award. This unique and potentially life-saving collaboration aims to improve epilepsy treatment for young people by addressing the causes, diagnosis and clinical management of childhood epilepsies.
There are approximately 112,000 children and young people with epilepsy in the UK, and epilepsies that start in childhood are often linked with significant associated conditions affecting learning, motor control, cognition and behaviour. An epileptic seizure may be the first sign of a brain disorder, but it is the impact of the underlying condition on learning, behaviour, and participation in society that may result in the most disabling consequences for the child and family.
This jointly funded fellowship award is a grant of up to £300,000 which will support an early career researcher working in paediatric epilepsy and fund a project with the aim of reducing the impact of epilepsy on children and their families and carers. The fellowship will enable a researcher to investigate an area of research showing real potential and provide them with the funding to develop their own research group in this area.
Fundamental to this partnership will be engagement with the Young Epilepsy “Young Reps”, a panel of children and young people living with epilepsy, who will be asked to identify areas they believe are a priority for research. The outcomes from the engagement with children and young people with epilepsy will influence the decision-making criteria when awarding the joint fellowship.
Epilepsy Research UK Chief Executive Maxine Smeaton said, “Epilepsy in childhood can have a life-changing impact on families. We are driving research into new drug therapies that reduce seizures and the associated side effects and provide families with more effective ways to manage the condition. We are also investing in pioneering research that will bring us closer to preventing epilepsy in the future.”
Young Epilepsy Chief Executive Mark Devlin commented, “Childhood epilepsies can affect almost every aspect of young lives and in severe cases, can put their futures on hold. We are thrilled to offer, this joint Fellowship Grant dedicated to understanding more about the causes and management of childhood epilepsy, and we are delighted that the consultation with young people themselves will ensure the voice of children and young people with epilepsy help to steer this important research.”
Following Epilepsy Research UK’s International Expert Workshop on Epilepsy and Neurodevelopmental Disorders, which Young Epilepsy took part in, a commitment was made to prioritising research to drive innovations in the treatment of childhood epilepsies to reduce the impact of the condition on children and their families and carers.
Professor Helen Cross OBE, Prince of Wales Chair of Childhood Epilepsy, President of ERUK and Young Epilepsy Trustee said, “Contributing to research into the childhood onset epilepsies and associated comorbidities, an often-neglected area, offers a real chance of making a difference to children with epilepsy and their families.”
Those wishing to apply for this fellowship can find the full guidance and application forms here: https://epilepsyresearch.org.uk/young-epilepsy-fellowship/
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One in ten (11%) women who are currently taking the epilepsy medicine valproate are unaware of the possible risk of birth defects if taken in pregnancy. Furthermore, one in five (18%) don’t know that, when taken in pregnancy, the medicine could also cause learning and developmental delays in children. These worrying figures come from a newly published survey by the charities Young Epilepsy, Epilepsy Action and Epilepsy Society.