The latest from St Piers School & College
Receiving a diagnosis of epilepsy can be frightening and leave young people and their families feeling overwhelmed and isolated. By connecting with other families at our in-person meet-ups, Katelinn and Lorna were able to find mutual support and a safe space to share the challenges they face.
We have launched a text service specifically aimed at young people living with epilepsy that are in distress. With a simple text message quoting the word ‘PURPLE’, users across the UK can access help and support from Shout’s trained volunteers at any time.
Young Epilepsy is an official charity partner of the country’s largest family fundraising festival – CarFest!
We’re teaming up with Geek Retreat to create an inclusive gaming space for young people with epilepsy.
A special shout out to the incredible Fliss who completed the 26 miles in 26 days challenge as part of our Purple Day celebrations. Fliss was our top fundraiser for the challenge, raising £1,200. Read her story here.
SUDEP Action and Cornwall Partnership NHS Foundation Trust are collaborating with Young Epilepsy to create a paediatric version of the SUDEP and Seizure Safety Checklist. The award-winning Checklist, which launched in 2015, supports health professionals in discussing epilepsy mortality risks and SUDEP (Sudden Unexpected Death in Epilepsy) with their patients (aged 16+).
Young Epilepsy is joining with other organisations from the epilepsy community to call for a review of proposals that could have an impact on access to the anti-seizure medication valproate.
Epilepsy Medications in Pregnancy Survey Report
We found worrying disparities across the UK in school policies and support for young people living with epilepsy after over 1,000 families from across the country responded anonymously to our survey about the support they received at school during the 2021/22 academic year.
The medicines regulator (MHRA) has announced further changes to prescribing the epilepsy medication valproate which are due to be introduced over the coming months.
