Our commitment to improving lives through research
At Young Epilepsy, research is central to our mission. Through our Research Programme, we support projects that improve understanding of childhood epilepsy, lead to better treatments, and strengthen support for children, young people and families.
Between July 2024 and June 2025, we funded and supported a wide range of new, ongoing and completed research projects across the UK and internationally. These sit within three core workstreams: Understanding Childhood Epilepsies, Outstanding Treatments, and Outstanding Support.
Understanding childhood epilepsies
Our research is helping uncover the causes of epilepsy and reduce long diagnostic journeys for families.
Key areas of progress include:
- Faster and more accurate diagnosis, including genetic testing projects such as Gene‑STEPS and infant epilepsy studies, helping families understand the cause of epilepsy earlier.
- Rare and severe epilepsies, with research into conditions such as SCN1A‑related epilepsies, Sunflower syndrome, Landau‑Kleffner syndrome, and metabolic epilepsies.
- Better understanding of the brain, using advanced imaging, genomics and disease models to explore how epilepsy develops and affects learning, memory and development.
This work lays the foundations for more personalised care and targeted treatments.
Developing better treatments and interventions
We are supporting research that aims to move beyond symptom control towards more effective, tailored treatments.
Highlights include:
- Improving epilepsy surgery outcomes, using artificial intelligence, advanced imaging (including 7‑Tesla MRI), and new tools to better identify seizure‑causing brain areas.
- Innovative treatment approaches, such as deep brain stimulation for children with complex epilepsy and early‑stage gene therapy research.
- Vitamin B6‑related epilepsies, with work to improve diagnosis, develop safer formulations, and explore newborn screening options.
Together, these projects aim to improve seizure control, reduce side effects, and protect long‑term development.
Supporting children, young people and families
Our research also focuses on everyday life with epilepsy.
This includes:
- Mental health and wellbeing, such as Acceptance and Commitment Therapy (ACT) groups co‑designed with young people.
- Physical activity, education and inclusion, exploring how children with epilepsy can be better supported at school and stay active.
- Transitions and support systems, helping young people move safely from children’s to adult healthcare.
- Patient and public involvement, through the E‑CURE network, ensuring families shape the research that affects them.
Why this matters
Epilepsy can affect every part of a child’s life. Through this research programme, Young Epilepsy is driving progress that leads to earlier diagnoses, safer treatments, better support, and real hope for the future.
None of this work would be possible without the generosity of our supporters and research partners. Together, we are helping ensure that no child or young person faces epilepsy alone.
