They'll be no retiring for M and I. We'll be caring 24/7 for E and T now they've both left education and moved to what passes for social care in this country. #autism #FragileX #epilepsy
You absolutely can be "hard-working" if you're relying on the state pension: there are plenty of people still working after pensionable age. And that's not counting grandparents stepping up to look after children, or pensioners caring for their unwell partner etc.
As a matter of logic you cannot be “hard working” if you rely on the state pension. I hope ministers will keep (start?) explaining that the state pension isn’t paid out of an investment fund but by the contributions of those currently working.
September 29, 2026 at 9:20 AM
August 14, 2026 at 4:46 PM
None of the reports/IVs I heard on R5 today mentioned that disabled people use social care. All the emphasis was on older people who were worried about losing their homes to pay for care. #autism #epilepsy #FragileX
On Burnham’s social care speech today, it was deeply refreshing to see him make a point to thank immigrants who provide social care. I hope that reflects where we go with ILR bill but beyond that it is good to hear gratitude and openness rather than scapegoating and penny pinching.
July 29, 2026 at 5:13 PM
A Cincinnati Children's led team and collaborators at Forge Biologics report that #genetherapy restored key #fragileX syndrome traits in mice. Study found improvements in seizure susceptibility, sensory hyperactivity and EEG biomarkers that could help bridge animal studies and future human trials.
Gene Therapy Restores Key Fragile X Traits in Preclinical Study - Research Horizons
Gene therapy restored key fragile X syndrome traits in mice, supporting future work on FMR1 replacement as a potential disease-modifying treatment.
scienceblog.cincinnatichildrens.org
July 27, 2026 at 7:47 PM
A Cincinnati Children's led team and collaborators at Forge Biologics report that #genetherapy restored key #fragileX syndrome traits in mice. Study found improvements in seizure susceptibility, sensory hyperactivity and EEG biomarkers that could help bridge animal studies and future human trials.
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
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
Fragile X Syndrome is the most common inherited cause of intellectual disability, and most people have never heard of it.
Share this video to spread awareness of Fragile X this month.
#UndividedApp #FragileXSyndrome #FragileXAwarenessMonth #FragileX #Disability
Share this video to spread awareness of Fragile X this month.
#UndividedApp #FragileXSyndrome #FragileXAwarenessMonth #FragileX #Disability
July 25, 2026 at 7:31 PM
Fragile X Syndrome is the most common inherited cause of intellectual disability, and most people have never heard of it.
Share this video to spread awareness of Fragile X this month.
#UndividedApp #FragileXSyndrome #FragileXAwarenessMonth #FragileX #Disability
Share this video to spread awareness of Fragile X this month.
#UndividedApp #FragileXSyndrome #FragileXAwarenessMonth #FragileX #Disability
During #NationalFragileXAwarenessMonth, did you know the KU Life Span Institute is home to one of the nation's longest-running studies on #FragileX and its impact on families? Interested in learning more about our work in understanding #FXS? Visit https://fragilexlab.ku.edu
July 24, 2026 at 2:05 PM
During #NationalFragileXAwarenessMonth, did you know the KU Life Span Institute is home to one of the nation's longest-running studies on #FragileX and its impact on families? Interested in learning more about our work in understanding #FXS? Visit https://fragilexlab.ku.edu
This July, we celebrate the Fragile X community and remain committed to building a future where everyone belongs.
#Fragilexawarenessmonth #FragileX #DisabilityAdvocacy #developmentaldisabilities #Belonging
#Fragilexawarenessmonth #FragileX #DisabilityAdvocacy #developmentaldisabilities #Belonging
July 23, 2026 at 2:20 AM
This July, we celebrate the Fragile X community and remain committed to building a future where everyone belongs.
#Fragilexawarenessmonth #FragileX #DisabilityAdvocacy #developmentaldisabilities #Belonging
#Fragilexawarenessmonth #FragileX #DisabilityAdvocacy #developmentaldisabilities #Belonging
Boman Irani emphasizes the role of cinema in creating awareness about Fragile X syndrome #BomanIrani #FragileX #socialnewsxyz
Boman Irani emphasizes the role of cinema in creating awareness about Fragile X syndrome
Mumbai, July 17 (SocialNews.XYZ) Actor Boman Irani has highlighted the power of cinema in creating awareness and encouraging meaningful conversations around Fragile X syndrome. Emphasizing the importance of stories that bring lesser-known realities into the spotlight, the ‘Munna Bhai M.B.B.S’ actor shared how films can help audiences develop greater empathy, understanding and acceptance. Ahead of World Fragile X Awareness Day, Boman stressed the need for more awareness and inclusion for individuals and families affected by the condition. On Friday, the actor took to his Instagram handle and posted his video talking about the film ‘Fragile.’
www.socialnews.xyz
July 17, 2026 at 12:11 PM
Boman Irani emphasizes the role of cinema in creating awareness about Fragile X syndrome #BomanIrani #FragileX #socialnewsxyz
Amazing progress, though admittedly just in mice.
Gene therapy that dramatically reduces the most severe symptoms of #FragileX, one of the leading genetic causes of cognitive disabilities. Ain't #science grand?🧪
www.nature.com/articles/s41...
Gene therapy that dramatically reduces the most severe symptoms of #FragileX, one of the leading genetic causes of cognitive disabilities. Ain't #science grand?🧪
www.nature.com/articles/s41...
FMR1 gene therapy restores translationally relevant phenotypes in a mouse model for fragile X syndrome - Gene Therapy
Gene Therapy - FMR1 gene therapy restores translationally relevant phenotypes in a mouse model for fragile X syndrome
www.nature.com
July 16, 2026 at 3:03 PM
Amazing progress, though admittedly just in mice.
Gene therapy that dramatically reduces the most severe symptoms of #FragileX, one of the leading genetic causes of cognitive disabilities. Ain't #science grand?🧪
www.nature.com/articles/s41...
Gene therapy that dramatically reduces the most severe symptoms of #FragileX, one of the leading genetic causes of cognitive disabilities. Ain't #science grand?🧪
www.nature.com/articles/s41...
Yet again the government portraying PIP as an out-of-work benefit when it is in fact to cover the additional costs of being disabled and in many cases ENABLES PEOPLE TO WORK. #FragileX #epilepsy #autism
www.theguardian.com/society/2026...
www.theguardian.com/society/2026...
Labour must stop just writing a cheque for benefit claimants, says McFadden
Exclusive: Work and pensions secretary signals possible reform to welfare as ministers await key reviews
www.theguardian.com
July 15, 2026 at 4:08 PM
Yet again the government portraying PIP as an out-of-work benefit when it is in fact to cover the additional costs of being disabled and in many cases ENABLES PEOPLE TO WORK. #FragileX #epilepsy #autism
www.theguardian.com/society/2026...
www.theguardian.com/society/2026...
Over 50% of people with learning disabilities die before they are 65. That's not just a number to me - it's people like E and T. #FragileX #epilepsy
www.bbc.co.uk/news/article...
www.bbc.co.uk/news/article...
Over half of adults with learning difficulties do not live past 65, report says
The government says the findings are stark, while a campaign group says they should be "headline news".
www.bbc.co.uk
July 13, 2026 at 10:32 PM
Over 50% of people with learning disabilities die before they are 65. That's not just a number to me - it's people like E and T. #FragileX #epilepsy
www.bbc.co.uk/news/article...
www.bbc.co.uk/news/article...
June 22, 2026 at 1:29 PM
🧠New clinical trial could open up new treatments for FragileX syndrome
⚗️ #CONNECTATherapeutics is launching a Phase IIa trial with CTH120. Dr Rafael de la Torre @researchmar.bsky.social HMRIB Dr Ana Aldea #HMRIB Dr Ana Roche #I3PT & Dr @maradierssen.bsky.social @crg.eu
👉 www.researchmar.net/news/850
⚗️ #CONNECTATherapeutics is launching a Phase IIa trial with CTH120. Dr Rafael de la Torre @researchmar.bsky.social HMRIB Dr Ana Aldea #HMRIB Dr Ana Roche #I3PT & Dr @maradierssen.bsky.social @crg.eu
👉 www.researchmar.net/news/850
June 10, 2026 at 9:26 AM
🧠New clinical trial could open up new treatments for FragileX syndrome
⚗️ #CONNECTATherapeutics is launching a Phase IIa trial with CTH120. Dr Rafael de la Torre @researchmar.bsky.social HMRIB Dr Ana Aldea #HMRIB Dr Ana Roche #I3PT & Dr @maradierssen.bsky.social @crg.eu
👉 www.researchmar.net/news/850
⚗️ #CONNECTATherapeutics is launching a Phase IIa trial with CTH120. Dr Rafael de la Torre @researchmar.bsky.social HMRIB Dr Ana Aldea #HMRIB Dr Ana Roche #I3PT & Dr @maradierssen.bsky.social @crg.eu
👉 www.researchmar.net/news/850
Guaranteed breaks sound amazing but where are you going to find the paid carers to cover this? #FragileX #epilepsy #autism
Carers' Week and every week, Liberal Democrats will always stand up for our paid and unpaid carers.
Because you can't fix the NHS without fixing social care.
Because you can't fix the NHS without fixing social care.
June 9, 2026 at 3:50 PM
Read the June issue of @JMDiagn online!
Full issue: https://www.jmdjournal.org/issue/S1525-1578(25)X0007-6
#Cytology #Polymorphism #HIV #FragileX #LiquidBiopsy
Full issue: https://www.jmdjournal.org/issue/S1525-1578(25)X0007-6
#Cytology #Polymorphism #HIV #FragileX #LiquidBiopsy
June 4, 2026 at 2:04 PM
Read the June issue of @JMDiagn online!
Full issue: https://www.jmdjournal.org/issue/S1525-1578(25)X0007-6
#Cytology #Polymorphism #HIV #FragileX #LiquidBiopsy
Full issue: https://www.jmdjournal.org/issue/S1525-1578(25)X0007-6
#Cytology #Polymorphism #HIV #FragileX #LiquidBiopsy
May 31, 2026 at 1:26 PM
"The most recent Census data found there were around 5.8 million unpaid carers in the UK. Of these, nearly a third said they provided 50 or more hours of care per week."
It's 24/7 here with no respite as can't recruit PAs. #autism #FragileX #epilepsy
www.bbc.co.uk/news/article...
It's 24/7 here with no respite as can't recruit PAs. #autism #FragileX #epilepsy
www.bbc.co.uk/news/article...
Former EastEnders star Natalie Cassidy trains as a carer after her dad’s death
The actress's experience caring for her father inspired her to return to education in a new BBC show.
www.bbc.co.uk
May 24, 2026 at 10:07 AM
"The most recent Census data found there were around 5.8 million unpaid carers in the UK. Of these, nearly a third said they provided 50 or more hours of care per week."
It's 24/7 here with no respite as can't recruit PAs. #autism #FragileX #epilepsy
www.bbc.co.uk/news/article...
It's 24/7 here with no respite as can't recruit PAs. #autism #FragileX #epilepsy
www.bbc.co.uk/news/article...
Of course if there were local SEND provision you wouldn’t need taxis. There was never a suitable placement for T in-county. Oh and those taxis enable many parents to work as they don’t have to spend hours on school run. #FragileX #epilepsy
Speaking on R4, new Reform Essex councillor Peter Harris says the party will be looking (among other places) at the £43m spent on taxis to schools as part of wider efforts to "potentially reallocate some... funds to meet with our priorities." The bulk of that will be transport for Send pupils.
May 9, 2026 at 8:10 AM
Our local NHS community services are now run by a private company. Yesterday it too me THREE HOURS to get through to the epilepsy team on an urgent matter and today an hour to get through to the continence team. Good job I don't have a job apart from caring, isn't it? #FragileX #epilepsy
May 1, 2026 at 4:02 PM
🔬Help advance #FragileX research
👨⚕️Recruiting men (18-45) for a clinical trial with a new drug
👉Join the study: https://www.researchmar.net/estudis-clinics/26/avaluar-la-seguretat-tolerabilitat-i-eficacia-dun-medicament-en-estudi-per-la-sindrome-x-fragil
@researchmar.bsky.social #AEMPS
👨⚕️Recruiting men (18-45) for a clinical trial with a new drug
👉Join the study: https://www.researchmar.net/estudis-clinics/26/avaluar-la-seguretat-tolerabilitat-i-eficacia-dun-medicament-en-estudi-per-la-sindrome-x-fragil
@researchmar.bsky.social #AEMPS
May 1, 2026 at 10:15 AM
🔬Help advance #FragileX research
👨⚕️Recruiting men (18-45) for a clinical trial with a new drug
👉Join the study: https://www.researchmar.net/estudis-clinics/26/avaluar-la-seguretat-tolerabilitat-i-eficacia-dun-medicament-en-estudi-per-la-sindrome-x-fragil
@researchmar.bsky.social #AEMPS
👨⚕️Recruiting men (18-45) for a clinical trial with a new drug
👉Join the study: https://www.researchmar.net/estudis-clinics/26/avaluar-la-seguretat-tolerabilitat-i-eficacia-dun-medicament-en-estudi-per-la-sindrome-x-fragil
@researchmar.bsky.social #AEMPS