#fragilex
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Elizabeth Berry-Kravis will be our 2025 Warren Distinguished Lecturer on December 4 -- Especially appropriate b/c EBK is leading clinician studying #fragilex syndrome
November 20, 2025 at 5:19 PM
alexadwilson.bsky.social
When it comes down to it, people with LD are seen as less worthy of treatment than their neuro-typical peers. DNRs being slapped on any other group in society would provoke outrage. #autism #FragileX #epilepsy

www.itv.com/news/2025-11...
www.itv.com
November 14, 2025 at 4:19 PM
alexadwilson.bsky.social
Another life lost in a "care" home. And people wonder why we don't consider a residential placement for T. #FragileX #epilepsy

mydaftlife.com/2025/11/11/c...
Come again?
Another day, another inquest. George Julian in court in Croydon. Her commitment to shedding light on the horrors embedded within our health and social care systems is extraordinary. This week, it’s…
mydaftlife.com
November 11, 2025 at 5:27 PM
hannibal31.bsky.social
Love creating soccer jerseys for our annual charity soccer match. This year, it’s Scotland vs 1950s USA. #FragileX #FRAXA #CallumCupIX
October 21, 2025 at 12:35 AM
alexadwilson.bsky.social
Today is International #FragileX Awareness Day. Here's a thread a wrote a while ago about how it affects our family.
October 10, 2025 at 6:51 PM
jmdiagn.bsky.social
#LegacyContent: Strategic Implementation of #FragileX Carrier Screening in China: A Focused Pilot Study.

Free in the #OpenArchive: https://www.jmdjournal.org/article/S1525-1578(24)00156-9/fulltext
October 7, 2025 at 7:05 PM
alexadwilson.bsky.social
T has made (with help, obvs) the most beautiful bowl at college. I adore that you can see his fingerprints on it where he's moulded it. #FragileX #epilepsy
A grey-y/cream bowl with the imprint of a large leaf in it. The leaf shape has a blue glaze.
October 3, 2025 at 1:27 PM
moonspell2.bsky.social
Jepp.
Scheint aber ohne mich sehr langweilig zu sein. Oder Trotzi, Latrine, KinderKlein und fragilex Wikingerx🤭?
September 17, 2025 at 4:40 PM
alexadwilson.bsky.social
T's hedgehog made last Winter. #FragileX #SundayPixPerfection
A photo of a clay and twig hedgehog. The caption says "T made a beautiful clay and stick hedgehog in his nature studies session...he stripped the leaved off branches before helping snip them into lengths with secateurs. He then used the snipped twigs to make his hedgehog"
September 14, 2025 at 3:57 PM
pharmaphorum.bsky.social
#Servier has advanced its emerging #neurology pipeline into the clinical trials stage by #licensing a drug for the rare genetic disorder #FragileX syndrome (FXS) from UK biotech #KaerusBioscience.

pharmaphorum.com/news/servier...
Servier bets $450m on Fragile X syndrome drug
Servier has pushed its emerging neurology pipeline into the clinical trials stage by licensing a drug for Fragile X syndrome from the UK's Kaerus.
pharmaphorum.com
September 8, 2025 at 9:32 AM
speechapraxia.bsky.social
Fragile X is the most common inherited cause of learning disability & autism and speech apraxia is often part of the picture. Disrupted brain connectivity affects speech planning, leading to expressive language challenges. #autism #cas #speech #FragileX #Apraxia speechapraxia.co.uk/about-sauk/f...
Fragile X Syndrome and Speech Apraxia: Unpacking the Connection
Fragile X syndrome is the most common cause of inherited learning disability and a leading single-gene cause of autism. Expressive language difficulties are almost universal, but recent research shows...
speechapraxia.co.uk
August 31, 2025 at 7:28 AM
alexadwilson.bsky.social
I started making my breakfast (toast and marmalade) at 9. I've just managed to eat it. Cold, obvs. Caring is fun. #FragileX #autism #epilepsy
August 13, 2025 at 8:38 AM
alexadwilson.bsky.social
E's felted night scene with the moon shining on the sea. Based on the view from the cottage which we go to on our hols. #SundayPixCoast #autism #FragileX
A deep blue sky above with wispy moonlit clouds and a full moon. Below, a pale blue/grey sea with the moon reflected in it. To either side of the horizon are yellow hills - based on those framing the view from the cottage we go to.
August 3, 2025 at 1:11 PM
alexadwilson.bsky.social
From Prof Chris Hatton's evidence to the COVID 19 Public Inquiry focussing on the impact on people with Learning Disabilities. Screenshots from the Easy Read version and a photo of the whiteboard at No 10 saying "Who do we not save?" #autism #FragileX
A screenshot from the easy read report of The Hat's evidence. People with LD "more likely to go to hospital with COVID, LESS LIKELY TO GET TREATMENT WHEN THEY WERE IN HOSPITAL, much more likely to die from COVID than people without LD". A screenshot from the easy read report of The Hat's evidence. People with LD "more likely to go to hospital with COVID, LESS LIKELY TO GET TREATMENT WHEN THEY WERE IN HOSPITAL, much more likely to die from COVID than people without LD".
July 30, 2025 at 9:43 AM
gail21.bsky.social
Today is Fragile X day, It’s a condition similar to autism but it’s caused by a mutation of the FMR1 gene and that is in my family. Boys are more likely to be affected but some girls are as well.
My grandson at 24 is the most amazing man I know, kind and loving.
#FragileX
Two poster telling the signs and symptoms of fragile x Children and adults with fragile X syndrome (FXS) can have a variety of behaviors. Some behaviors you may see: - Hand flapping or biting - Hyperactivity/short attention span - Easily distracted - Difficulty making eye contact - Shyness/anxiety - Impulsive/challenging Why Awareness of Fragile X Is So Important So that carriers and those affected receive the most appropriate treatment, therapy and support., So that children are not-mis-diagnosed with Autism or other conditions rather than Fragile X Syndrome So that carriers aren't mis-diagnosed with Parkinson's or Alzheimer's Disease rather than as a Fragile X carrier suffering from FXTAS So that carrier women with FXPOl who struggle to conceive, or cannot conceive at all, are given the correct genetic counselling and treatment. So that those carriers suffering from neuropsychiatric; pain or autoimmune disorders receive appropriate treatment and counselling: So thặt more funding is given towards
July 21, 2025 at 11:46 PM
alexadwilson.bsky.social
Phone-in on @nickyaacampbell.bsky.social ‘s show now about SEND. Lots to say about that eh, pals? Can’t call in myself as with T. #FragileX #epilepsy #hypermobility #alltheotherstuff
July 7, 2025 at 9:18 AM
alexadwilson.bsky.social
Had a whole hour to myself this afternoon. Spent 46 mins of it on the phone re: social care. Marvellous fun. #autism #FragileX #epilepsy
July 1, 2025 at 3:09 PM
kulifespan.bsky.social
For more than 20 years, KU researchers have partnered with families across 23 states to better understand #FragileX syndrome—the most common inherited cause of #IntellectualDisability.

👉 Learn more: https://loom.ly/4JWynkg

#FragileXAwarenessMonth #FragileX #KUresearch
An illustration highlight the impact of Fragile X Syndrome with a large Fragile X chromosome next to people in a scene
July 1, 2025 at 2:06 PM
rezaevt.bsky.social
In a world of chaos, it's important to learn about each other and what makes us all different - to practice empathy and keep growing as a person.

Thank you for giving me a platform to raise awareness about #FragileX and for helping me reach our goal in ONE DAY!
June 23, 2025 at 4:43 PM
alexadwilson.bsky.social
Please read this. Panels are the bane of disabled people/carers lives. You are not permitted to know who is on the panel or what information they receive and yet access to education and support are determined by them. #autism #FragileX #epilepsy
mumof3amigos.bsky.social Ramandeep Kaur @mumof3amigos.bsky.social · Jun 20
Stay with me on this as I have thoughts. The #AssistedDying Bill is problematic for many reasons and I’ll address a couple here.

We already reside in a society where certain groups of people face greater health inequalities than the general population. 1/
June 20, 2025 at 12:49 PM
dteaj.bsky.social
Is there a specific name for diseases like Huntingtons and FragileX where a single DNA triplet expands its repeats beyond the normal?
June 20, 2025 at 12:11 AM
xrobnx.bsky.social
Just more close photos of the #FamilyTree my grandmother made for me. It’s not clear in this chart, but there was a case of uhm, cousin marrying, many generations back. My grandmother was her own fourth cousin. I wonder if that’s why #FragileX makes an appearance often? Who knows.
June 14, 2025 at 2:33 PM
alexadwilson.bsky.social
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
alexadwilson.bsky.social
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
A very lovely pom-pom in bright blue and purple wool. His two favourite colours.
June 6, 2025 at 2:03 PM
jde22ix.bsky.social
🙏🏽 Quick search for online control participants for #FragileX study:
Study by the University of Florence, which investigates the relationship between numerical and visuo-spatial abilities, and the influence of genetic, experiential, and emotional factors.
June 3, 2025 at 5:33 PM