Aylamay

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.

[KWAJO- Social Issues Campaigner @Kwajotweneboa]

Please Share 🙏🏽🚨

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.

[Rob Galloway @DrRobgalloway]

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

[PumpkinsandPost-Its @2ndtimeMama]

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

[Dr. Yousef 🇵🇸 @yousef_ki1]

Humanity check 💔
If you’re scrolling, Comment with a dot.

[Matt Doogue @MattDoogue]

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

[Kent Page @KentPage]

"Every student can learn, just not on the same day, or the same way." ~George Evans

Please retweet if you agree w/this #FridayFeeling & that #EducationCannotWait for any child!

#UN @bmz_bund@bmz_bund @noradno @sida @canadadev @dfat @qatar_fund @dutchmfa @ksrelief_en @yasminesherif1 #222MillionDreams✨📚

[NHS Million @NHSMillion]

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.

[Aylamay @BakeRunEat]

@_AshleyRichmond Send. Thank you, I enjoy reading your posts!

[Aylamay @BakeRunEat]

@adeleparks Yes, I'm 44

[BladeoftheSun @BladeoftheS]

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.

[TheThreeHijabis @THijabis]

.@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

[Have scotland scored a goal today? @SCOGOALS]

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

[Dr Haili Hughes FRSA @HughesHaili]

It's publication day! So I'd like to give a copy of my new book away. Please RT and I'll pick a winner next week
@Team_English1

[Ruth Swailes @SwailesRuth]

For anyone who needs it today.

[Aylamay @BakeRunEat]

@BL_Learning @jeffreykboakye @Aleemagray @NATE_diversitea @NATEfeed @EnglishAssoc @CarnegieMedals @The_UKLA @EmpathyLabUK @AlwaysLearnWeb @LKN_Libraries @BooksForKeeps @histassoc That's fantastic news! We will really benefit from the learning experience. I greatly appreciate you taking the time to reply and for making the event so inclusive. I will register, looking forward to listening and learning 🙌🏼🎶

[Aylamay @BakeRunEat]

@jeffreykboakye @BL_Learning @Aleemagray @NATE_diversitea @NATEfeed @EnglishAssoc @CarnegieMedals @The_UKLA @EmpathyLabUK @AlwaysLearnWeb @LKN_Libraries @BooksForKeeps @histassoc Thank you so much for taking the time to reply - much appreciated

[PumpkinsandPost-Its @2ndtimeMama]

Twitter please can you help by sharing and tagging anyone who might help?

Liz is 16 and lives to take photographs. She has a rare and aggressive cancer which doctors have told her means she has between 6 months and 3 years to live. We hope every day for a lifetime for her but if we can’t achieve that we hope to create her a lifetime of memories. If we can make even one of her photography bucket list happen for her she will be beyond delighted.

Liz would love to:

Photograph the rehearsal of a major musical @OfficialALW @HamiltonWestEnd @sixthemusical @lesmisofficial @PhantomOpera @StarlightExp @MatildaMusical @TheLionKing
Watch the filming of Would I Lie To You @WILTY_TV @BBC1
Have photographs published in as many magazines as possible @hellomag @GraziaUK @BritishVogue @ELLEUK @harpersbazaarus @okmagworldwide @Tivoli
Take photographs of the catwalk at London Fashion Week @LondonFashionWk
Photograph circus performers practicing their act @CircusVegasUK @planetcircusuk
Help film a movie @PinewoodStudios @ElstreeStudios @EalingStudios
Photograph a music festival @glastonbury @liveatleedsfest
Take photos of the Christmas markets at Tivoli Gardens
Do a photo shoot with professional models @IMGmodels @StormModels @Wilhelmina @PremierModels
Take photos in a fashion shoot at a big fashion house @MulberryEngland @FollowWestwood @victoriabeckham @Burberry @StellaMcCartney @PaulSmithDesign

She would also jump at any other photography based opportunities.

Please help us to give her the life she deserves in the short time she has.

[Jeffrey Boakye @jeffreykboakye]

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.

[Jeffrey Boakye @jeffreykboakye]

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.