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The BEE-PP project wants to hear parents' opinions about the topics and issues they want to be addressed in research into early epilepsy! Get involved in the discussion shaping the direction of new research! Please consider taking part, find more info at - beestudy.co.uk

🎁Last chances to enter our prize draw for the BEE-PP survey and win a £25 voucher🎁 The winner will be announced this Friday!! The survey will remain open till then so please get involved to be in with a chance of winning.🐝 Details on our website: beestudy.co.uk

📢Want to know more about our BEE-PP project? This video shows the importance of understanding the experiences of families with children with epilepsy, and what parents/caregivers would like future research to prioritise.🐝 Watch the full thing here at: beestudy.co.uk/findings

⬇️⬇️ Check out the parent blog post from our Infant Epilepsy Parent Priorities project below! #BEEStudy #PPI

I published my first, first author paper on PsyArXiv! In the paper, we explored the experiences of parents of children with rare neurogenetic conditions across the first year of the COVID-19 pandemic in the UK. (1/3) psyarxiv.com/wjqx8/

Having a great time at #INSAR2023 learning from many and sharing knowledge! Head over to BEE_Study where we share highlights and presentations from our autism and development team at Institute of Psychiatry, Psychology & Neuroscience

Really enjoyed taking part in a panel on using EEG to derive phenotypes in genetic models of autism, and chaired fantastically by Emily Jones #INSAR2023

Super grateful to share this work and chat about next steps for the EDiTS Study with other autism researchers #INSAR2023 #TSC

Check out the BEE_Study: Brain development in Early Epilepsy (BEE) Study! 👇 The UK study aims to track the development of babies 👶 with #epilepsy, in order to understand features that might predict later outcomes. Find out more, here! 👇 epilepsysparks.com/research-invol… #autism

A pleasure to attend and present a poster at TSC Alliance Research Conference 2023 in Washington DC! Learnt so much from the TSC community and researchers around the world 🧬

Extremely grateful to win the Vicky H. Whittemore Travel Award at the TSC Alliance Research Conference this year for a poster presentation! EDiTS Study data was used to examine the sleep phenotype and it’s association with sensory processing in infants with TSC

Some final thoughts on the TSC Alliance Research Conference - thoroughly enjoyed the Keynote Presentation on Outcome and impact of the PREVeNT trial, and read some great preliminary findings about the relationship between TAND and seizure characteristics

Huge congratulations to 2023 Developmental Margaret Donaldson award winner Charlotte Tye. Keynote now in the Lecture Theatre #CogDev2023.

So pleased that my first, first-author paper on early development and epilepsy in infants diagnosed with Tuberous Sclerosis Complex, was published in Mac Keith Press Developmental Medicine and Child Neurology! onlinelibrary.wiley.com/doi/pdfdirect/… #TSC (1/3)

We used EDiTS Study data to explore early changes in developmental ability, language, and adaptive behaviour in infants aged up to 24 months old with tuberous sclerosis complex (TSC), and investigated whether clinical features of epilepsy influence this pathway (2/3).

A huge thanks to all of the co-authors on the paper, all of the families involved in the EDiTS Study and the TSC community who made this work possible! Charlotte Tye Tony Charman Emily Jones AbigailKRunicles Mark Johnson and Patrick Bolton. #TSC (3/3)

🐝💜#EpilepsyAwarenessMonth 1 in 10 people may have a seizure during their lifetime. If you see someone having a seizure, here is how you can help them! For more details please refer to these links: nhs.uk/conditions/wha… cdc.gov/epilepsy/about…

Pleased to have contributed to this— Impact of and research priorities in early onset epilepsy: An investigation of parental concerns sciencedirect.com/science/articl…

Super pleased to share my 2nd first-author paper which explores the impact of and research priorities in early onset epilepsy from parents' perspectives. Thanks so much to the co-authors and families who made this work possible! BEE_Study Read here: tinyurl.com/3ay9sfxm

(2/2) Our focus group findings demonstrate the complex and multifaceted impact of early onset epilepsy on the child and family. Thanks also to our funders King's College London Wellcome Autistica Epilepsy Research Institute Read here: tinyurl.com/3ay9sfxm