Read more: https://bit.ly/3dO9CLZ
Young Epilepsy coordinates and funds research into the causes, treatments and impact of all aspects of childhood epilepsy. We want to secure the best outcome for everyone affected by the childhood epilepsies and we know the best way to do this is through research.
Led by the Prince of Wales’s Chair of Childhood Epilepsy, and Young Epilepsy Trustee, Professor Helen Cross OBE, our research partnership with Great Ormond Street Hospital and the University College London Great Ormond Street Institute of Child Health, works to 3 key Workstreams:
Around half of people diagnosed with epilepsy never learn the cause of it. This is concerning from both the personal and clinician perspective. The more we know about what causes epilepsy and how else the underlying cause is affecting the individual patient, the better clinicians can manage and treat, and the better the patient may understand themselves.
Epilepsy treatments have not changed very much over recent years and the process of finding the right combination of treatments for each patient can take a long time. This is very hard on patients, and their families. Continued advancement of imaging, surgery, dietetics,genomics, targeted treatment, and new medicines is therefore crucial in the quest to effectively treat and one day perhaps cure every epilepsy.
This workstream is set to tackle the wider challenges associated with growing up with epilepsy and in treating childhood epilepsies. It is important to know what epilepsy is, and how to treat it, but if the systems and supports are not in place to act on this knowledge then patients cannot benefit.
We need you to help us strengthen the voice of children and young people with epilepsy and their families in research.
We have launched the first network of young people with epilepsy, and parents of people with epilepsy, whose sole purpose is to consult on the development of research projects across our partnership.
If you would like your experiences to ensure epilepsy research is answering the right questions in the right way, please get in contact and sign up to the E-CURe network.
Young Epilepsy is working with UCL Institute of Neurology, University of Nottingham, Magnetic Shields Ltd, The Wellcome Centre for Human Neuroimaging, and UCL GOS-Institute of Child Health to design and build the world’s first wearable MEG scanner.
This new type of brain scanner will transform the lives of young people with epilepsy by giving more young people the chance of seizure freedom through epilepsy surgery.
We are pioneering this technology for UK hospitals so that this becomes and accessible service for all children with epilepsy.
We're raising money to research life-changing genetic services for babies with epilepsy in the UK, Australia, Canada and the US.
We will pioneer the use of rapid genome testing in babies with epilepsy to understand whether if finding the genetic problem earlier on in life improves epilepsy and development in the long-term.
The project is led by UCL GOS-Institute of Child Health and Great Ormond Street Hospital and will work with Boston Children’s Hospital, USA, the Murdoch Children’s Research Institute with The Royal Children’s Hospital in Melbourne, Australia, and The Hospital for Sick Children (SickKids) in Toronto, Canada, and is the first global collaboration in child health genomics.
Read more: https://bit.ly/3dO9CLZ
We are following 120 children who we saw as babies with epilepsy as they grow up in order to understand the causes and impact of their epilepsy on their health and on their learning, mental health and wellbeing.
We want to map any patterns in these epilepsies which we may be able to use to get to the correct diagnosis and treatment much faster than is currently possible.
For instance, if we see a pattern in someone at 2 years old and are able to prove that this pattern is indicative of an epilepsy which usually is not recognised until someone is 7 or 8, then we are able to start the best treatment for them 5/6 years earlier. This may significantly reduce the impact that their epilepsy has on their health and life chances.
Travel to appointments, babysitter costs, loss of earnings, loss of time in school, reduced academic achievement, social problems, mental health problems, work problems, lack of inclusion etc. All of these are common potential issues faced by children with epilepsy and their families. These life costs build up and can wreak havoc on young lives.
We want to understand these ‘hidden costs’ so that we as a charity can advocate for better services and support for children with epilepsy and their families.