'The years may pass, but still, you stay. As near and dear as yesterday.'

Our support team are here for you on 01235 772852 and at [email protected]

#epilepsy #SUDEP #grief

Lymphangioleiomyomatosis in patients with tuberous sclerosis: a national centre audit dlvr.it/T4jF3V

An upcoming #research opportunity

Cardiff University is investigating how genetic #counselling and testing is being assessed. They are looking for input from you. Get involved here ow.ly/8czC50QtVXX.

For further queries, contact Grace Norman at [email protected].

😀 I don’t know if you’ll be as excited about the results as I, but…(!) In this week’s podcast, neurologist Linda Dalic 🇦🇺 shares with us the huuuuge seizure reduction in people with the rare #epilepsy 🧠 Lennox Gastaut Syndrome (LGS) - as the result of Deep Brain Stimulation…

We are so glad to have been involved in this impactful science event for children & their families as part of #CardiffScienceFestival last month - read the article here: cardiff.ac.uk/news/view/2804… 🧬

In case you missed this, hear from Alison talking about her daughter who died from #SUDEP in 2022. She was 25 and 17 weeks pregnant.

Her family believe she was failed because she wasn’t given info – or choices – about medicines that might have kept her alive.

#epilepsy

Please see attached a copy of our letter delivered to Rishi Sunak at No 10 yesterday. Let’s hope we get a prompt response.

Yesterday we delivered a letter to Prime Minister
Rishi Sunak signed by 16 charities & organisations representing immunocompromised people across the UK.

Our biggest annual event, Big Day, is on Sat 18 May in Reading! We’ve got a brill agenda this year, including research talks and support workshops. Want to come but worried about the cost? Apply for the TSA Support Fund or for complementary tickets. tuberous-sclerosis.org/event/big-day-…

2 weeks left to apply to work with our Education & Engagement team at Wales Gene Park! ⏲️ Closing date is Sunday 7th April. Apply here: krb-sjobs.brassring.com/TGnewUI/Search…

Thank you all for supporting us this Purple Day!

We appreciate everyone who has shared our messages & helped us to reach those who need information about epilepsy and support the most.

We couldn’t do what we do without you 💜

#epilepsy #SUDEP #seizures

Our research and safety tools, like EpSMon (award-winning epilepsy monitoring app) & our SUDEP & Seizure Safety Checklist help educate those living with #epilepsy .

Find out more about EpSMon: tinyurl.com/5hcshvb7

Checklist: tinyurl.com/yc7vczx9

#SUDEP #seizures

Want to help spread awareness of epilepsy and SUDEP?

Share this Purple Day Pointer:

Around one person in 100 in the UK has epilepsy. It can affect anyone, of any age, from any walk of life.

@sudepaction #epilepsy #sudepaction #PurpleDay2024

To donate: justgiving.com/campaign/sudep…

Hear/see my passion for educating the world re the epilepsies - on #PurpleDay and every day!
The epilepsies affect us ALL - directly or indirectly - there's a high rate amongst people with #cerebralpalsy , #dementia , #TraumaticBrainInjury , #stroke , #IntellectualDisability ,…

Always missed and loved 💜
Still looking to get the truth nearly 2 years on

Head to our JustGiving page to set up a Purple Day fundraiser: justgiving.com/campaign/sudep…

Donate what you can to help spread awareness of epilepsy 💜

#epilepsy #sudepaction #PurpleDay2024

The lives lost to #SUDEP is heartbreaking, families & friends left devastated by premature preventable deaths. Choices, informed decision & implications matter. Alison’s courage & determination in seeking answers is remarkable. Please share #PurpleDay #Epilepsy #Seizure

💜 Lovely to see MSPs wearing crocheted purple hearts today in memory of Jessica Johnston who died shortly before her 21st birthday.

💜Purple Day is an action and awareness day on epilepsy. Hamilton Town House is one of many buildings lit up purple. What others have you seen?

Share it Purple!

By supporting us, you will be strengthening the voice of a charity that cares. We work hard to help people with epilepsy live as safely as possible and to be here for the suddenly bereaved.

💜

justgiving.com/campaign/sudep…

#epilepsy #SUDEP

Since 2017, Ellie Goodwin has travelled the world as an ESL teacher. Here, in a blog written for SUDEP Action on #PurpleDay2024 , she explains what it’s like to travel with #epilepsy – and how the condition is perceived in other countries.

Read blog: sudep.org/article/epilep…