June 22, 2026 at 1:29 PM
August 14, 2026 at 4:46 PM
For the return of Pottery Throwdown, here's T first creation in pottery at college. Night all. #FragileX #epilepsy
January 5, 2025 at 9:14 PM
For the return of Pottery Throwdown, here's T first creation in pottery at college. Night all. #FragileX #epilepsy
I expect that being an unpaid carer I'm counted as one of the "economically inactive" and yet unpaid carers save the country £162 BILLION each year (Source: Petrillo & Bennett 2023). That's the equivalent of another NHS. #FragileX #autism #epilepsy
November 26, 2024 at 6:48 PM
I expect that being an unpaid carer I'm counted as one of the "economically inactive" and yet unpaid carers save the country £162 BILLION each year (Source: Petrillo & Bennett 2023). That's the equivalent of another NHS. #FragileX #autism #epilepsy
Hands up if you're working the whole of the Bank Holiday weekend. It goes with the territory. At least the sun was out for the very busy 12:01 to Paris.
#TrainLife
#TrainLife
May 23, 2025 at 12:04 PM
At CSHL, Gabrielle Pouchelon and Dimitri Dumontier reveal how Fragile X disrupts brain wiring, offering hope for autism. bioRxivpreprint #AutismAcceptanceMonth #FragileX #InspiringDiscovery #ScienceMakesLifeBetter
April 20, 2026 at 1:52 PM
At CSHL, Gabrielle Pouchelon and Dimitri Dumontier reveal how Fragile X disrupts brain wiring, offering hope for autism. bioRxivpreprint #AutismAcceptanceMonth #FragileX #InspiringDiscovery #ScienceMakesLifeBetter
Positive Clinical Trial Results for a New #FragileX Treatment. Congrats to Dr. Erickson and team! #autism #MedSky
scienceblog.cincinnatichildrens.org/positive-cli...
scienceblog.cincinnatichildrens.org/positive-cli...
February 11, 2025 at 8:14 PM
Positive Clinical Trial Results for a New #FragileX Treatment. Congrats to Dr. Erickson and team! #autism #MedSky
scienceblog.cincinnatichildrens.org/positive-cli...
scienceblog.cincinnatichildrens.org/positive-cli...
https://fragilex.org/get-involved/national-fragilex-awareness-month/ elon rebranded a day after fragile X awareness day
July 24, 2023 at 11:32 AM
https://fragilex.org/get-involved/national-fragilex-awareness-month/ elon rebranded a day after fragile X awareness day
May 31, 2026 at 1:26 PM
It's a constant, incredibly damaging drip, drip, drip of misinformation. PIP is NOT an out-of-work benefit but meant to help recipients people with the additional costs that come with being disabled. #autism #FragileX #epilepsy
Have you noticed how disability benefits are now being treated in public discussion as if they are simply unemployment benefits?
An increasing sleight of hand and the politicians, journalists and commentators doing it need to be challenged.
An increasing sleight of hand and the politicians, journalists and commentators doing it need to be challenged.
July 27, 2026 at 5:38 PM
T has made a pom-pom in his weaving session at college. This is a big thing given his poor motor skills. #FragileX #epilepsy #hypermobility
June 6, 2025 at 2:03 PM
T has made a pom-pom in his weaving session at college. This is a big thing given his poor motor skills. #FragileX #epilepsy #hypermobility
Hugely indebted to the chap at the LA who told me he understood the stress of being a carer as he'd "had to arrange a cleaner for my father-in-law". Fuck, and I cannot emphasise this enough, off. #FragileX #epilepsy #hypermobility and all the other things.
April 15, 2026 at 9:34 AM
Hugely indebted to the chap at the LA who told me he understood the stress of being a carer as he'd "had to arrange a cleaner for my father-in-law". Fuck, and I cannot emphasise this enough, off. #FragileX #epilepsy #hypermobility and all the other things.
My 14-year-old son (he has #FragileX and #Autism) decided to tuck out Great Dane in for a little nap today, even gave her his Mr. Bear.
#greatdane #danelife #dog #autismsky
#greatdane #danelife #dog #autismsky
January 20, 2026 at 12:47 AM
My 14-year-old son (he has #FragileX and #Autism) decided to tuck out Great Dane in for a little nap today, even gave her his Mr. Bear.
#greatdane #danelife #dog #autismsky
#greatdane #danelife #dog #autismsky
That £184 BILLION is the equivalent of an additional NHS in England and Wales. Without unpaid carers.... #autism #FragileX #epilepsy #hypermobility
Number crunching: Cuts to health and disability benefit, and reduction in financial support for carers v unpaid care carried out every year.
From the new Private Eye, out now.
From the new Private Eye, out now.
April 3, 2025 at 11:09 AM
That £184 BILLION is the equivalent of an additional NHS in England and Wales. Without unpaid carers.... #autism #FragileX #epilepsy #hypermobility
Unpaid carers save the country £184 BILLION each year which is roughly equivalent to an additional NHS. CA is a pittance. Have your say too if you are able. #autism #FragileX #epilepsy #hypermobility
The DWP are asking for people to contribute evidence for a forthcoming review of Carers Allowance and how it operates.
Admittedly this is niche, but please spread the word so it reaches the right people.
www.gov.uk/government/c...
Admittedly this is niche, but please spread the word so it reaches the right people.
www.gov.uk/government/c...
Carer's Allowance: call for evidence
This call for evidence is being administered by the Department for Work and Pensions (DWP) to gather information and views to build on the Department’s existing evidence. What we hear will help shape ...
www.gov.uk
July 26, 2026 at 11:28 AM
Unpaid carers save the country £184 BILLION each year which is roughly equivalent to an additional NHS. CA is a pittance. Have your say too if you are able. #autism #FragileX #epilepsy #hypermobility
T's hedgehog made last Winter. #FragileX #SundayPixPerfection
September 14, 2025 at 3:57 PM
T's hedgehog made last Winter. #FragileX #SundayPixPerfection
Here we go again with the "economically inactive" business on @bbc5live... Unpaid carers save the state £162 BILLION each year. That's the equivalent of another NHS in England & Wales. (Petrillo & Bennett 2023). Show us some respect. #FragileX #autism #epilepsy #hypermobility
June 12, 2025 at 9:09 AM
Here we go again with the "economically inactive" business on @bbc5live... Unpaid carers save the state £162 BILLION each year. That's the equivalent of another NHS in England & Wales. (Petrillo & Bennett 2023). Show us some respect. #FragileX #autism #epilepsy #hypermobility
Utterly brilliant thread on carers & sleep (or lack of). Hypervigilance is utterly exhausting -it's no wonder some carers experience higher levels of stress than combat troops. The long-term health impacts are terrifying yet we're just told to "make time for yourself". #FragileX #epilepsy #autism
November 30, 2025 at 6:20 PM
T has hyperacusis. People playing loud music in a confined space would be unbearable for him. #FragileX #epilepsy
II wrote about the Lib Dems' idea of stopping unwanted noise/music/speakerphones on public transport. No-one's said it yet, but this is a neurodivergence/autism issue maybeimamazed.substack.com/p/why-speake...
Why speakerphones and blaring music on public transport is a neurodivergence issue
The UK Liberal Democrats want to ban loud music, videos and phone calls on buses and trains. Respect to them
maybeimamazed.substack.com
April 24, 2025 at 5:00 PM