Radio silence has been because I’m trying to figure out a different place to be (and hopefully regain some of what I loved about here when I started a decade ago). If you are interested in being in touch and you don’t already have a way to do that outside here, DM me!

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1 in every 100 children have Tourette Syndrome.

This is the same prevalence as Autism and childhood epilepsy, yet we know so much more about these conditions.

It's time to talk about Tourettes and make our voices heard. #tourettes #tourettes yndrome

“It is the obligation of every person born in a safer room to open the door when someone in danger knocks.”
- Dina Nayeri

#Refugees

How was everyone else’s Halloween?

#SafeMumSafeBaby is calling for greater awareness of the risks many epilepsy drugs pose to unborn babies when taken by pregnant women.

Alongside this, we are eager to hear from women and girls under 55 with epilepsy. 1/3

wh1.snapsurveys.com/s.asp?k=166661…

Before this platform goes entirely to hell in a handcart, be sure to read this exceptional blog.

What a powerful collaboration!

If it’s being done, it’s replicable

An very sobering and extremely important watch #SUDEPActionDay2022

In the time it must take to concoct such ‘strategies’ and then implement them, I’m pretty sure everyone involved could learn an awful lot about the Equality Act instead.

SUDEP - Sudden Unexpected Death in Epilepsy. It’s terrifying to know this is a risk but it doesn’t stop being a risk just because you don’t know about it #TalkSudepNow

Another survey from Children's Commissioner for England that has little to no accessibility for children with learning disabilities. It really wouldn't have been hard to produce an Easyread version or a symbol based questionnaire to support a greater degree of independent access.

I note #AttendanceMatters is trending. A quick peek & I see that the DfE attendance drive has created an explosion of schools wishing to inform that they reward children for having good physical & emotional health.
I’d hoped for more ethical leadership.

helen2tubies.wordpress.com/2019/06/30/100…

Another excellent and accurate thread from Naomi Fisher
It’s heartening to see it liked and shared so many times - I wonder when the shift in professional practice and schools policies will happen.

Stephen Unwin Absolutely and wholly human 💜

Important thread - as a 1st in the family (Russell Group) university goer, when I decided to do an MSc many years later I deliberately chose University of Hertfordshire because it encouraged lived experience applicants alongside clinicians and academics and always welcomed challenge.

This is not only vital for the future of research in epilepsy but is also an excellent example of how to collaboratively set research priorities

This shit simply wouldn’t happen anywhere else, as Matt demonstrates here (not for the first time)

Heard cheeping. Went to investigate. Found the tame turkey in the porch - apparently it thinks it should be allowed to roam freely in our house!

This guy earns a six figure salary. This year, he’s hosed five times more £ than that on nudge theory consultancy that aims to ‘reset the expectations of parents & professionals’