Rachel J

@wagamama_uk please make it possible to swap kids meals to udon noodles when ordering online. My daughter is autistic and these are the only ones she likes

Please share As some of you may know, a few months ago our daughter Frankie was diagnosed with an incredibly rare genetic condition called DeSanto-Shinawi Syndrome (DESSH). Only about 250 people in the world have it. It causes developmental delay, speech and swallowing difficulties, problems with coordination and balance, and intellectual disability — meaning she will need lifelong support from us. About a month after Frankie’s diagnosis, an extraordinary piece of research came out from the Mayo Clinic in the USA. Using artificial intelligence, researchers analysed over 30,000 already-licensed drugs to see if any could upregulate the remaining healthy copy of the damaged WAC gene — the gene affected in DESSH. Remarkably, the AI program identified a drug that seemed to work in lab studies, and it was then tried in one child with the same condition. The early six-month data released recently is incredibly promising — showing measurable increases in WAC protein and meaningful developmental progress. As a family, we wanted something positive to come from what has been a very difficult time. We’ve therefore set up a charity — Rare People – The Research Charity — to fund research into rare neurodevelopmental conditions like Frankie’s. The first goal is to help fund a clinical trial here in the UK to see if the same benefits seen at Mayo can be replicated in other children, and then to expand this approach to other rare genetic conditions. Most families with these conditions are told there’s no treatment — nothing that can be done except love and support. The aim of our charity is to change that: to show that there may be medical interventions which, through AI and repurposed drugs, could directly improve quality of life for these children and their families. The charity is now fully registered with the Charity Commission and has HMRC Gift Aid and JustGiving in place. You can find out more about Frankie’s condition, the research, and our plans at: rarepeople.org If you’d like to set up a sponsored event, please go to: justgiving.com/charity/rarepe… If you’d prefer to make a direct donation, please visit: checkout.justgiving.com/tycrulaz6w Thank you so much for your support — it means the world to us, and to families like ours. Rob

A UTI can make an elderly person delirious, paranoid, even psychotic - and no one questions it. It’s standard medicine. But a child develops OCD, rage, food refusal, hallucinations after strep or a virus - and suddenly it’s “just anxiety”? Really? We’ve known for decades that infections can mess with the brain. That inflammation can hijack behaviour. That immune cells talk to neurons. So why is it still taboo to say a reactivated virus, strep, Mycoplasma or chronic inflammation could cause neuropsychiatric symptoms? Why is psychiatry still acting like the immune system doesn’t exist? In our clinic, we see it all the time: ➡️Kids misdiagnosed with “mental illness” ➡️Underlying infections ignored ➡️Immune dysfunction missed ➡️Told “it’s all in their head” But here’s the thing:
It is in their head.
It’s just coming from their immune system. Until medicine wakes up, children will keep slipping through the cracks - mislabelled, misdiagnosed, and misunderstood. Link to blog in comments 👇 #Neuroinflammation #PANDAS #PANS #FunctionalMedicine

#PansPandasAwarenessDay #LightUpForPansPandas 9th October 2025

#Pans #Pandas #PansPandasAwarenessDay 👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻

#PansPandasAwarenessDay #LightUp4Pans 9th Oct 🟢🟢🟢🟢🟢 @naiireland @NeuroscienceIRL @TCINeuroscience @Futureneuro_ie @TCD_TRiCC

@BGT #BGT we would love to come along and sing for you with Pans Pandas Unite Choir #PansPandasAwarenessDay

We can't contain our excitement 🤭 #BGT Auditions continue tomorrow in BLACKPOOL!!! We can't wait to see your talent and if you're still unsure about auditioning, this is your sign to just go for it! Applications are *still* open, so now's your chance: itv.com/britainsgottal…

#PansPandasAwareness #PansPandasHour Has your child had a sudden change in behaviour? It could be PansPandas. See Pans Pandas UK for more information and advice for GPs and teachers..

@GaryBarlow #posttourblues Anyone want another @GaryBarlow @takethat tour?

If you guys send your pics from the gigs I’ll re post for the next 48 hrs - it will make it feel like we’re still on tour #posttourblues

@GaryBarlow #posttourblues

@GaryBarlow #posttourblues #6thavenue

@GaryBarlow #posttourblues The only cure is.. planning for the next tour!

panspandasuk.org/post/weve-won-… As a mum to a 👧with #PansPandasHour, I’ve seen the life-changing work charities like @PANSPANDASUK provide to families in crisis 💙 Huge thanks to @TNLComFund for supporting children with immune mediated neuropsych disorders. @alisonacton @Matt_Maddren

#PansPandasHour #FathersDay Big shout out to all the #dads who have encountered these devastating conditions including @notestomyboy @The_HappyDaddy and many others... raising awareness & raising us all up. 💫 We see you #Pans #Pandas 💪

panspandasuk.org/post/steering-… Epilepsy. MS. Parkinson’s. Lupus. Anti-NMDA encephalitis. All once labelled as "psychiatric." Now we know better. #PansPandasHour To every #NHS Trust : don’t repeat history Please show your support @DrNighatArif @DrAmirKhanGP @xandvt @MichaelRosenYes

@wesstreeting @wesstreeting Your plan for change needs to include developing guidelines for @PANSPANDASUK . Children are going untreated, or misdiagnosed, and in the meantime they are suffering. #panspandashour

Nearly a quarter of a million off NHS waiting lists. Lowest level in two years. And the first time they’ve fallen in April in 17 years! Lots done, lots to do. We’re delivering our Plan for Change. I won’t rest until the job is done.

Thank you to the amazing work of @PANSPANDASUK in raising awareness for kids with PANS/PANDAS. We need guidelines NOW to help our children @NHSEngland

@Se_Railway Thank you for the kids Easter Egg treats when we travelled from Tunbridge Wells on Easter Sunday- much appreciated :)

@The_HappyDaddy @PANSPANDASUK Same here.. I work for the NHS and am a huge advocate for the NHS. But our family has been HUGELY let down by the NHS due to the lack #PansPandas guidelines. Getting your child well should be a right, not a privilege!

Heading back to London tomorrow to see our daughter’s consultant. It’s an expensive route we’ve gone down but the NHS are not helping 😔 Hopefully in the years / decades other families battling @PANSPANDASUK will have better support via the National Health Service

#panspandashour My child's headteacher was able to recognise the onset of PANDAS in one of her pupils after a sudden change in behaviour and meltdowns.. So why can our GP's not do the same?? We need NHS guidelines NOW!