Carol-Anne Mum to Amber
@CDKL5AdvocacyMParent/carer of dd with CDKL5, charity chair, Social Worker Practice Mgr 4 IFA, BSc(Hons) Social Work MSc global Health. Trauma informed evangelist
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@CDKL5UK
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Why do #ParentCarers kill? Because they - & their disabled children - are failed by the system that’s meant to support them. An important piece by @kirs10robertson, feat. me, @Danwhite1972 & @WeAreCarers CW: Suicide, homicide, mental illness, abuse metro.co.uk/2024/11/02/lit…
#NCLW! Launched today in Bristol: Graduating Care South West, a new App and website for care experienced young people. A joint project with 14 local authorities across the West of England, co-produced with young people and leaving care teams. #NCLW24 #careleavers
My Culture Care Box™ contains: ✨A Motivational Bookmark ✨I AM 365' a book with affirmations and positive messages for every day of the year ✨Where Are You From? a book helping them to dig deeper into their heritage
The “my culture care box” is amazing, we purchased some recently with the amazing training delivered by the fabulous @JudithAMDenton @Amicus_foster
Are you a Social Worker, Foster Carer or work in a Residential Children’s Homes with a Black Child or Young Person in your Care? Make an investment in their identity that their future self will thank you for with our 'My Culture Care Box'.
🥁Introducing our My Culture Care Box™ Our research tells us that Black Children and Young People growing up in Children’s Social Care can feel disconnected from their Culture and Heritage.
New preprint alert 📢 Cenobamate as add-on treatment for #SCN8A developmental and epileptic encephalopathy ‼️ Our data suggest, that #cenobamate is a promising & safe treatment for SCN8A-DEE 💜 #Epilepsy 🧠🧬 @Elegardella @AledoNeuro @MadeleineOudin medrxiv.org/content/10.110…
This is a really helpful graphic from @contactfamilies summarising the excessively complex law on social care assessment for disabled children and families
All parent carers of disabled children in the UK have a right to ask for their family’s needs to be assessed by social services through a Needs Assessment and a Carer’s Assessment. Check out Contact for help guidance on applying, challenging and complaining @contactfamilies
News today of a murder-suicide involving a mother & her disabled child. There are ~13 carer-perpetrated homicides & homicide-suicides in England each year, with a range of motives. All are tragedies, many could have been prevented. If you need help, call @samaritans
Please RT and help Beth….
Are you a healthcare professional, with experience of working on adult #inpatient #psychiatricwards in the UK? We’re interested in hearing about your experience of providing psychologically safe care. See details below! @LeedsMedHealth @UoL_MHN @yqsrdotorg @YHPSRC
Back in Denmark 🇩🇰 after a fantastic @IlaeWeb congress in Rome 🇮🇹 Excellent scientific program & great catching up colleagues and friends 🤩 Incredibly proud of our PhD students & research fellows who presented their research on genetic 🧬 epilepsies 😍 #EEC2024 #Epilepsy 💜
This scene was some of the best and authentic acting /respect for each other I have witnessed - loved it well done Oliver and Bethany #sherwood
Ryan and Stephies final scene in #sherwood was the best for me, what fantastic actors which such rapport well done Oliver and Bethany
Presenting my work on miRNA precision therapy on the #EEC2024 in Rome @Futureneuro_ie @Prof_DCHenshall @IlaeWeb
Some excellent advice for #UnpaidCarers struggling with suicidal thoughts, from @MobiliseCare mobiliseonline.co.uk/overlooked-ris… #SuicidePrevention
Today we started the #EEC2024 @IlaeWeb Epilepsy Congress with a session on #CDKL5 deficiency disorder. It was a great example of collaboration between expert clinicians and parent advocates like @CDKL5AdvocacyM from @CDKL5UK 💚 it made it worth it to be there at 8am!
Great to meet with colleagues today and discuss about 30 years of experience of antiseizure medications and care and also future prospects, this time lamotrigine and topiramate at @IlaeWeb ##eec2024 in Rome @EpiCARE_ERN @uefne
It was great to meet @CeriPickering at the #ILAE #Europeanepilepsycongress24 #eec24 #epilepsy presenting her work on CDKL5 Astrocytes, I couldn’t claim to understand it, but we are grateful for her adding to the CDKL5 pool of research - good luck in your final PhD year Ceri,…
Looking forward to presenting the patient journey of rare and complex epilepsies at an Orion Pharma sponsored symposium @EEpicare @EpiCARE_ERN @CDKL5UK #patientjourney #epilepsy
The 15th European #Epilepsy Congress begins in three days! Matthew Walker, #ILAE-Europe chair, welcomes all delegates to Rome, Italy, for #EEC2024 from 7-11 September 2024. ilae.org/eec2024
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Who to follow
-
Cure CDKL5
@CDKL5UK -
Marinus
@MarinusPharma -
Jen Salter
@JenSalter6 -
ITA CDKL5 IVLC - C.F. 92049350157
@ITA_CDKL5_IVLC -
ASOCIACIÓN CDKL5
@cdkl5spain -
Jade Painter
@JadeePainter -
Michael Graham
@MichaelGGraham_ -
Rach Pearce
@RachPearce1 -
CNIC
@CNIC_CARDIO -
Michele Llewellyn
@MicheleLlewell1 -
Sarah Fraser
@sarahlfraser1 -
Julie Haines
@JulieaHaines -
Parc Científic de Barcelona
@PCB_UB -
ELIXIR Europe
@ELIXIREurope -
Awesomics
@Awesomics
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