How does it compare to a gingerbread?
06.03.2026 19:34
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How does it compare to a gingerbread?
Beautiful post in recognition of those living with rare diseases - which their can quickly become shorthand for a professional shoulder shrug.
My own child didn’t get diagnosed until adulthood - partly due to advances in genomics but largely due to professional curiosity and a willingness to listen
Interrupting the grim with the light: my book Double Discrimination is out 21 May🔽
It's influenced by my sister Raana, it's on racism and ableism, what happens when you feel both, why that matters (to us all) - and to do about it.
Feat. awesome people & projects
www.hachette.co.uk/titles/saba-...
Forgive the boasting but that’s the 47th five star review for my book and a very nice one it is too!
What's the business re Keppra rage 💊😡? True? False? Inbetween? Who cares about seizure control when they are feeling so depressed (or worse)? 🙄
Watch 👇!
🎬 YouTube lnkd.in/eAhf66-2
This episode is presented in partnership with EASEE®Epilepsie, by PRECISIS GmbH.
#epilepsy #keppra #kepprarage
So interesting and so important.
This is such a well crafted and crucial piece, especially when that ‘system that confuses control with virtue and compliance with morality’ is really perpetuated in schools from the youngest ages. It’s so baked in.
Agency and Responsibility
socialismoryourmoneyback.blogspot.com/2026/02/agen...
@officialspgb.bsky.social
Tragedy at the BAFTAs. There are no winners here, but there are some lessons for group and collective safety, some learning for leaders.
www.forbes.com/sites/drnanc...
A brown glass bottle of Country Life brewery golden amber ale standing next to a glass of said ale. The label is black and turquoise with a logo of a sea bird silhouette gliding over waves in a Celtic style. It also states the ale is called Reef Break, is 4.0% ABV and is bottle conditioned.
If you are fond of an ale, I can thoroughly recommend this little beauty. A small, independent North Devon brewery too - chin chin.
SAM ALTMAN: "People talk about how much energy it takes to train an Al model ... But it also takes a lot of energy to train a human. It takes like 20 years of life and all of the food you eat during that time before you get smart."
“Evil starts when you treat other people as things. There are perhaps worse crimes, but they begin when you treat other people as things.” - Terry Pratchett
If the parent does the interview, do they actually get the £150? Because that’s more than my kiddo ever got spent on them out of the hallowed school budget
She never lived to see this moment, but it’s worth remembering that none of this would have happened without Virginia Giuffre.
She had the courage to speak out against power and privilege when it was just her word against Andrew’s.
Thanks to her, justice & accountability may finally have its day.
“Let me state clearly: the law must take its course”.
This makes me feel more patriotic than any number of bedraggled lamppost flags.
AMAZING NEWS LADS! A good couple of thousand raised by this genius move by RSPCA Altrincham.
Positive action: an explainer
When you have a child with learning disabilities, this is the barbaric and terrifying reality that keeps you awake at night.
Album cover for Erykah Badu’s ‘Baduizm’
It's a year since my extraordinary daughter died unexpectedly. Re-sharing her obituary because it matters so much that the world understands who children w/ SEND actually are - especially right now when their right to the support they need in education is at risk. www.theguardian.com/lifeandstyle...
7 small bottles (approx 2 shots) and 2 larger bottles of homemade cassis sitting on a kitchen worktop), deep purple in colour and looking highly drinkable.
New year, new home, lots and lots of change but the cassis made from our blackcurrants (gathered at our old place) has been bottled, and tonight we will raise a Kir Royale to new adventures.
Should you need a bit of positivity rn👇🏾
While I figure things out, here’s a kind of holding post.
My (now adult) kids are out the other side of the statutory Education system - a door I’m delighted to shut.
Recently stepped into the world of the rare epilepsies and all that entails.
Still ranty and sweary, moved from a farm to the sea.
It’s a very apt description!
Thread. It is a great honour to announce the shortlist for the 2025 #Curae prize for unpaid carers
POETRY CATEGORY
Mistletoe. Sam Garvan
Diagnosis. Elizabeth Loudon
Sinkhole. Charlotte Ansell
I Love Him (like salt and water). Emma Wilson
The Shop at the End of a Wave. Ia Kozoboli.
thecuraeprize.uk
“But talking about my daughter feels like the most important thing I can do. She mattered because she was here and she was exceptional.”
What a beautiful and heartbreaking and important piece of writing this is.
This is a new image from #JWST.
The bright points with spikes are stars in the Milky Way.
Everything else is a galaxy.
Everything. Else. Is. A. Galaxy.
This is so beautifully written and so completely true and I agree wholeheartedly with all of it 🫶🏼
🧵 I want to tell you why I think this is one of the most important prizes running and I’m sorry that the book press and mainstream publishing hasn’t dived on it with bells on and support …
Yes! For me, at least, making publishing the goal changes the purpose - I rarely get to do things just because I want to, and this offers a way to practice and learn without the focus being on ‘the outcome’. Also, doesn’t rule out publishing for anyone who then wants to explore it later.
LOVE the sound of this!