Human. Woman. Mother of 4. Teaches English in a PRU. MAPP graduate, PhD student, always learning. Lover of football, books, fresh air & tea. Fan of LFC.
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A man with *STAGE 4* Incurable Brain Tumour is being forced to move onto the 15th floor of a Tower block or make himself intentionally homeless.
He has mobility issues from chemo and his doctors have previously written to Thurrock council.
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:
https://t.co/D8dm55PMED
If you’d like to set up a sponsored event, please go to:
https://t.co/rxnZ0lg9V8
If you’d prefer to make a direct donation, please visit:
https://t.co/obDFC4RVNh
Thank you so much for your support — it means the world to us, and to families like ours.
Rob
Tomorrow should have been Liz’s 18th Birthday. In another world, and other lifetime she would no doubt have been out tonight celebrating with friends. I would have sat home worrying about whether she would be ok. It’s a worry that as I sit here tonight I would give anything to have. Desmoplastic Small Round Cell Tumour took her from us in just 10 months. Before her diagnosis Liz had only one week off school - in year three for chicken pox. We would often joke that she was indestructible - if only that had been true.
Tomorrow we would love to flood the internet with her photographs, she can’t be here to celebrate but that doesn’t mean she doesn’t deserve a celebration. If you could find time to share one and encourage others to do the same we would be incredibly grateful. I’ll be sharing some throughout the day as well.
If anyone would like to buy Liz a birthday drink you can do so here: https://t.co/iSsJO83LLs #buylizadrink
If you see this post alongside some of Liz’s work and would like to treat yourself to a calendar containing 12 of Liz’s best photographs you can do so here: https://t.co/YyFLvZUK4O
Every penny will go to @CaptureDSRCTC to fund research into the palliative care of young people with cancers that have less than a 15% survival rate.
Together we can ensure other young people get to truly Live even if their lives are far too short. Together we can make sure others get to make their dreams come true - just as Liz did.
Forever loved. Forever missed. Forever 17.
Our beautiful, talented girl.
#LizHatton #ForLiz
Walking the West Highland Way for Autism Awareness!
We’re taking on a tough but meaningful challenge—walking the West Highland Way (96 miles) in just six days, wild camping each night, to raise funds and awareness for autism. And if our legs are still standing, we’ll push ourselves even further by attempting to climb Ben Nevis on day seven! We will be doing this in July this year!
This journey will be physically and mentally demanding, but it’s nothing compared to the daily challenges faced by those with autism and their families. We’re doing this to shine a light on the incredible strength, resilience, and uniqueness of autistic individuals.
Every donation counts. Fiat or Crypto. Whether big or small, your support will help make a real difference. Please contribute if you can, and help us spread awareness by sharing our story.
Together, we can take steps—literally and figuratively—toward a more understanding and inclusive world!
Our first goal is £2.5k but we hope to smash that target.
Donation link in comments
Thanks!
Matt and Abi
This is Senior Sister Julie Anne MacDonald receiving a beautiful guard of honour after 42 years of service to the NHS.
Thanks for everything, Julie Anne.
Please repost for her.
Michelle Mone can be expelled from the House of Lords by a simple majority vote in the Commons, and then in the House of Lords.
Like if she needs to go.
RT if she has to go.
.@England ⚽️ without migration 👇🏽
This is what the #England men’s team would look like without players born outside the UK or with at least one parent or grandparent born abroad.
The team would consist of three players.
(via @MigrationUK)
#ENGSWI#ThreeLions#EURO2024
Ok so I really need a job ASAP. I'm 16 and currently in care. And I have no money coming in. I'm a good lad I won't be any bother. Just looking t start working and making something of myself. Happy to do anything and happy to travel please someone help me out
The optics tell you EVERYTHING.
The victim unnamed, sidelined and dismissed, the killer shown in hero poses and made intriguing. Why? because white supremacy SEES the world in this way.
If you aren’t disgusted by this I have nothing for you. RIEP Daniel Anjorin.
The Sun refers to Daniel Anjorin, RIEP, as ‘sword lad’. The Metro goes out of its way to humanise his killer.
…
It’s beyond disrespectful. It’s callous, dismissive, dehumanising for young Daniel, and a cold reminder of socially embedded white supremacy.