BPNA conference 2024

Our UKIST chairperson Jenny Rawling represented the charity at the recent British Paediatric Neurologists Association annual conference in Bristol, together with other representatives of UKRET charities (UK rare epilepsies together – a new umbrella group to encourage cooperation between the small epilepsy charities). The conference is a great opportunity to network with some of the […]

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The BEE (brain development in early epilepsy) project

The Brain development in Early Epilepsy (BEE) study aims to track the development of babies with epilepsy. The study is funded by an Epilepsy Research UK and Autistica fellowship, and will be co-sponsored by King’s College London and Guy’s and St Thomas’ NHS Foundation Trust. UKIST members were involved in focus groups in the early […]

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Our December warrior Caleb

Caleb’s story is written by his mum Adela. A small proportion of  children with infantile spasms later develop Lennox-Gastaut Syndrome – characterised by multiple seizure types and characteristic EEG abnormalities. Seizures in LGS are often difficult to treat. Caleb’s story illustrates the difficulties families with drug resistant epilepsy are still having accessing medical cannabis, despite […]

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Epilepsy awareness month Fun run launches 1st November!

Tickets for our Fun Run go on sale 1st November at 6:00am! This is a virtual event that you can complete anywhere you choose. Simply purchase your ticket, complete your distance and send us a screenshot from a suitable fitness/tracking app as evidence to receive your medal. We are also hosting optional leaderboards for those […]

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Our November warrior Ivy-Rose

 Ivy-Rose’s story is written by her mum Kylie   My beautiful Ivy-Rose was born November 2021. Pregnancy was fine until told I had polyhydramnios and couldn’t go into labour naturally so had to be induced at 38 weeks. Having two previous pregnancies with natural births I was a little nervous. I ended up with covid […]

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Our fabulous fundraisers!

UKIST are constantly humbled by the generosity of the wonderful people who have had some contact with the charity and then volunteer to raise funds for us. We’ve had a busy couple of months with multiple events taking place so we’d like to thank….   Jake and Stuart who attempted the gruelling South Coast 100km […]

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Helping our pre-verbal children to communicate

Many children struggle with developing speech and communication after an infantile spasms diagnosis so UKIST directs some of our resources to support parents in this area – we have a rolling speech and language course with free access for all support group members and we have been running small group sessions to introduce parents to […]

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Our October warrior – Cerys

This is Cerys and this is her story, written by mum Delyth. Cerys was born in March 2012 at 39 weeks after a very straightforward pregnancy and uncomplicated birth. Due to other conditions I suffered with in the past she was our miracle baby. I often think back to those first few months of Cerys’ […]

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Back to school … part 2

Ella is 4 years old now and just starting mainstream foundation. She was diagnosed with infantile spasms at 16 weeks and then Aicardi syndrome when she was 2 years old. She has had a rocky few years since diagnosis and still battles seizures most days but is always smiling and happy. She is so pleased […]

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