LGS Foundation UK & Ireland

The LGS Foundation is dedicated to improving the lives of individuals with Lennox-Gastaut Syndrome through research, awareness programmes and events.

[Epilepsy Action @epilepsyaction]

A new study has found that an estimated 633,000 people are living with epilepsy in the UK.
You can read more on our website: https://t.co/KwUBMKspb1
#EpilepsyAwareness

[Howard Beckett @HowardRBeckett]

Wholesale Gas prices (year ahead) currently 134p per therm.

Wholesale Gas prices (year ahead) reached 702p per therm in August.

Don’t let anyone tell you otherwise. We are being ripped up.

Gas prices must come down NOW!

[LGS Foundation @LGS_Foundation]

Any seizure free day is a good day!! And it's Open Access!! Yes!!
Fenfluramine provides clinically meaningful reduction in frequency of drop seizures in patients with #LennoxGastautSyndrome
#Epilepsy #RareDisease #RareEpilepsies

https://t.co/mgXnTZknBK

[Danny Did Foundation @DannyDidOrg]

This #TedTalk from @Wafula_Sitawa shares her frustrations about living with #epilepsy, especially the mental health & stigma challenges that come with life with #seizures. It's only 8-minutes long & could make a positive difference for someone you know.💙
https://t.co/nxJSMtzIKY

[Tracy Dixon-Salazar @TracyDixonSalaz]

Inspiring day. ❤️

[LGS Foundation UK & Ireland @LGSFoundationUK]

Having a shared decision making conversation with people/families about treatment options is very important. An understanding of #whatmatterstoyou informs all conversations. #precisionmedecine offers exciting developments and treatment opportunities. @Pers_Care @cyrilenecullen

[EpiCARE @EpiCARE_ERN]

Great ongoing discussion on #precisionmedecine, but also about the importance of support and personal discussions with patients and their families.

#Rareepilepsies #RomeWorkshop22

[LGS Foundation UK & Ireland @LGSFoundationUK]

All of these are tremendous initiatives- well done all! @Pers_Care #MakingADiffererence @cyrilenecullen @MariawWillis

[LGS Foundation UK & Ireland @LGSFoundationUK]

People with lived experience of a long term health condition can learn more about how the NHS works and #MakeADifference

[HPCN @HampshirePCN]

Would you like the opportunity to meet other parents & carers and hear about their lived experience, of supporting a child or young person with mental health and/or emotional difficulties?
Then please have a look at our Future in Mind peer support sessions happening next week

[LGS Foundation UK & Ireland @LGSFoundationUK]

It is very important for families of and people with epilepsy to be aware of the risks. @sudepAction continue fantastic pioneering work and contribute to research papers such as this that offer genuine support and important information to people. @LGSFoundationUK @cyrilenecullen

[SUDEP Action @SudepAction]

Our vice-chair Prof Mike Kerr and CEO Jane Hanna were heavily involved in this important new paper, highlighting what ‘good’ likes like when it comes to epilepsy care pathways
https://t.co/sbTlwawtbm

[Kel Coulter 💙 @KelCoulter]

Not only did we have representatives from all NEY health care programmes, we also had a wide range of diverse voices & programmes. We heard how Lived Experience is being used to support T1 Diabetes, maternity, children & young people, primary care

[Stephen Lupton @stephenlupton]

Want to find out more about Peer Leadership, and joining a network which shapes and influences health and care?..
Join our event tomorrow, Thu 24 November, at either 1-2.30pm or 6-7.30pm to hear from #PeerLeaders like Trevor.
To join email - [email protected]
#100PeerLeaders

[Kirsty Jowett @kirstxx]

What does being a Peer Leader mean to someone with lived experience? Join our event on Thursday 24th November via MS Teams to hear more from Peer Leaders themselves who are actively #MakingADifference for more information email [email protected] to join #100PeerLeaders

[Personalised Care Institute @Pers_Care_Inst]

Have you seen that we're looking for more Personalised Care ambassadors?
Our blog covers:
✍️ application details
⏰ the time commitments
💡 ideal candidate criteria

Apply by 25th November.
Visit our website for more information: https://t.co/HrkCKwxIBh

[nicola gitsham @nicolagitsham]

Fantastic to see CORE20PLUS5 for children & young people published today. An approach to develop integrated approaches to driving down health care inequalities and increasing life chances @rukshanakapasi @CDC_tweets @NDTicentral @Pers_Care @nagina_j @SimonSimply @ChangeMakerNo1

[Patients Association @PatientsAssoc]

Roundtable discussion next week between patients & industry on partnership working & the benefits that brings to patients & industry. Part of #PatientPartnership week events.
Follow link for details https://t.co/YPZWrOrByN
#WorkWithUs

[SUDEP Action @SudepAction]

Our support is completely free, confidential, and ongoing.

If you would like to speak to our support team, contact 01235 772852 or email [email protected].

[M 💙 @22qmum]

I've completed week 3 of the @FutureLearn course 'Personalised Care: Peer Leadership...'! https://t.co/HhQiI6CiXR #PeerLeader

[Amy (she/her) @AmyMaryRose]

Or register for the event by scanning the QR code below