@Satb2uk profile picture
SATB2 Gene Trust UK @Satb2uk

The SATB2 Gene Trust UK was established to enhance the lives of those affected by SATB2-associated syndrome by raising awareness and supporting research

Joined November 2020
  • Tweets 87
  • Following 318
  • Followers 77
2 Photos and videos
SATB2 Gene Trust UK retweeted
Cleft Lip and Palate Action@CLAPACOMMUNITY
3 Feb 2024
Got it in one! 🎉 Yesterday's @nytimes #Wordle was 'CLEFT', guessed by millions of people around the world. It's always our first guess - what's yours?
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SATB2 Gene Trust UK retweeted
James O'Brien
@mrjamesob
1 May 2023
This is important. news.sky.com/story/child-tru…

Child Trust Funds: How son's disability leaves family fighting for 'basic right' to access his funds

"Among all the admin and appointments is the agonising, dull pain inside for your beloved child who is living such a difficult life every day."

news.sky.com
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bbc.co.uk/news/health-652662… Prof. Caroline Wright "Getting a genetic diagnosis is hugely important to families. It allows them to speak to other families who might be affected by the same condition, and hopefully target much more personalised management and ultimately treatment."

Thousands receive diagnosis after 60 new diseases found

Study analysed the DNA of families with unexplained, severe development disorders.

bbc.co.uk
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Absolutely spot on from Prof. Wright here, diagnosis allows families to share knowledge and experience with others who know exactly the challenges of their condition.
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SATB2 Gene Trust UK retweeted
Nikita Hayden@NikitaHayden
21 Feb 2023
My PhD thesis about siblings of people with intellectual and developmental disabilities has come out of its embargo period. It's now publicly available to download and read here - wrap.warwick.ac.uk/154246/
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SATB2 Gene Trust UK retweeted
Genomics England@GenomicsEngland
10 Dec 2022
What an extraordinary decade it's been.
Light blue background with DNA graphic wrapping the corner and the text: Ten years ago, today, the 100,000 Genomes Project was announced. At the time, no one in the world had attempted a project like this.

ALT Light blue background with DNA graphic wrapping the corner and the text: Ten years ago, today, the 100,000 Genomes Project was announced. At the time, no one in the world had attempted a project like this.

Light blue background with DNA graphic wrapping the corner and the text: It was a revolutionary approach to healthcare. Combining science, tech, and patient data to personalise care with participants informing every step.

ALT Light blue background with DNA graphic wrapping the corner and the text: It was a revolutionary approach to healthcare. Combining science, tech, and patient data to personalise care with participants informing every step.

Light blue background with colourful circles containing the text: Today, ten years from its start... 20-25% of rare disease patients have received diagnostic findings; ~50% of cancer results contain the potential for a therapy or clinical trial; We're still analysing genomes to find new answers for patients and participants

ALT Light blue background with colourful circles containing the text: Today, ten years from its start... 20-25% of rare disease patients have received diagnostic findings; ~50% of cancer results contain the potential for a therapy or clinical trial; We're still analysing genomes to find new answers for patients and participants

Light blue background with DNA graphic wrapping the corner and the text: Whole genome sequencing is now embedded into standard NHS care. We continue to analyse genomes to find new answers for patients and participants.

ALT Light blue background with DNA graphic wrapping the corner and the text: Whole genome sequencing is now embedded into standard NHS care. We continue to analyse genomes to find new answers for patients and participants.

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SATB2 Gene Trust UK retweeted
Happy Smiles Training CIC 😁👍@happysmilescic
7 Dec 2022
🤩 How about this feedback from Y7 pupils at @StPetersOrrell, who recently heard from our team during their #Careers Day, on what it means to be #Disabled entrepreneurs! 👏 Looking forward to see you all again @SPHS_Futures! #DisabilityHistoryMonth
"The happy smiles is the best one because it shows that just because you have a disability, it doesn’t mean that you can’t do anything."

ALT "The happy smiles is the best one because it shows that just because you have a disability, it doesn’t mean that you can’t do anything."

"I really enjoyed the happy smiles workshop as it told me somethings that I did not know before about disabilities"

ALT "I really enjoyed the happy smiles workshop as it told me somethings that I did not know before about disabilities"

"The happy smiles team was really inspirational to help us learn about people’s disabilities. Also the people were all lovely and I really enjoyed meeting them and working with them!"

ALT "The happy smiles team was really inspirational to help us learn about people’s disabilities. Also the people were all lovely and I really enjoyed meeting them and working with them!"

"It was that you can do anything no matter what other people think."

ALT "It was that you can do anything no matter what other people think."
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SATB2 Gene Trust UK retweeted
Mayor of London's Culture team
@LDN_Culture
7 Dec 2022
🎂 Liberty Festival, @MayorofLondon’s flagship D/deaf, disabled and neurodiverse arts festival, is twenty years old. This #DisabilityHistoryMonth we are celebrating Liberty's impact. 🎥 Here is a short round up video of the festival this year.
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So many of our Satb2 families received their diagnosis through this project, my own family included. I cannot thank you enough.
Genomics England@GenomicsEngland
6 Dec 2022
In honour of the announcement of the 10th anniversary of the 100,000 Genomes Project later this week, we're sharing this video from our CEO @chris_wigley. Filmed at our annual conference in May, he reflects on where he thinks genomics is headed in the next 10 years.
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SATB2 Gene Trust UK retweeted
Great Ormond Street Hospital for Children@GreatOrmondSt
6 Dec 2022
We're so impressed with Otis' reindeer impression!😍 Otis is here to bring joy and comfort to our patients and staff, bringing extra festive cheer today with his fantastic outfit.💙
A photo of a chocolate Labrador laying on the floor, with inflatable antlers on his head and a santa claus backpack.

ALT A photo of a chocolate Labrador laying on the floor, with inflatable antlers on his head and a santa claus backpack.

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SATB2 Gene Trust UK retweeted
Holocaust Memorial Day Trust
@HMD_UK
3 Dec 2022
On International Day of Persons with Disabilities we are remembering Anna Lehnkering, who was murdered by the Nazi - simply for being disabled. From 1939 until 1945, almost 250,000 people with disabilities were murdered by the Nazis. #IDPWD22 #DisabilityHistoryMonth
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Read Anna Lehnkering's life story

hmd.org.uk
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SATB2 Gene Trust UK retweeted
UK House of Commons
@HouseofCommons
1 Dec 2022
Have you heard of Henry Fawcett? What about the Disability Discrimination Act 1995? Brush up on your #DisabilityHistoryMonth knowledge with Penny, an archivist in Parliament, as she takes us through some important historical artefacts in the @UKParlArchives.
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SATB2 Gene Trust UK retweeted
Sociability@sociabilityapp
6 Dec 2022
As we near the last 10 days of #DisabilityHistoryMonth let's throwback to another blog of ours which covers what accessibility can look like sociability.app/blog/2022/10…
Sociability - 5 things to consider when thinking about accessibility. Take a tour of our app. Image of group of wheelchair users in Harrogate holding Sociability leaflets.

ALT Sociability - 5 things to consider when thinking about accessibility. Take a tour of our app. Image of group of wheelchair users in Harrogate holding Sociability leaflets.

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SATB2 Gene Trust UK retweeted
UCL Innovation and Enterprise@UCLEnterprise
6 Dec 2022
One in five people in the UK have a disability This #DisabilityHistoryMonth we're sharing about @GDIHub's pioneering work. We were able to provide knowledge exchange funding and business advice to GDI Hub. #DisabilityInnovation @UCLEngineering @uclcs bit.ly/2NT1UlY
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SATB2 Gene Trust UK retweeted
Beacon for Rare Diseases@RareBeacon
29 Nov 2022
Have your explored our new Resources Hub yet? Make an account for FREE to further your learning on topics of interest Whether you’re an individual, small group of volunteers or an established charity, our free trainings can help you to get started! resourceshub.rarebeacon.org/
This is a photo of a woman writing notes down in her notebook.

ALT This is a photo of a woman writing notes down in her notebook.

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SATB2 Gene Trust UK retweeted
Beacon for Rare Diseases@RareBeacon
4 Dec 2022
Day 4 of our #25DaysOfResources is here! Discover organisations that can help you on your personal rare journey rarebeacon.org/rare-diseases…

ALT This is an animated gift box opening on Day 4 saying our fourth resource is organisations that can help you on your personal rare journey
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SATB2 Gene Trust UK retweeted
Beacon for Rare Diseases@RareBeacon
2 Dec 2022
Our friends at @SandcastleTrust entered the 2023 @SmileyCFA! Watch Oscar & Theo's Sandcastle Memory now vote/RT!🚂 smileycharityfilmawards.com/…

Oscar & Theo's Sandcastle Memory

The Smiley Charity Film Awards is the world’s biggest campaign to promote cause-based films. Nearly half a million members of the public have voted in the…

smileycharityfilmawards.com
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Today is day 4 of #disabilityhistorymonth , here is an article from the BBC today discussing technology and disability bbc.co.uk/news/technology-63… The life changing technologies that have enabled our SAS people to communicate, such as AAC devices, make a massive difference.

Google opens its first UK centre making tech for disabled people

The research and development centre in London is the company's first of its kind outside the US.

bbc.co.uk
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SATB2 Gene Trust UK retweeted
Beacon for Rare Diseases@RareBeacon
1 Dec 2022
Neurological conditions are often the most difficult to develop effective/safe new therapies #Repurposing provides new opportunities for patients by cutting costs & time for development Follow the #VAMweek to discover more! @medicinesforEU medicinesforeurope.com/wp-co…
This is a graphic saying repurposing has been equally promising as de novo drug discovery in the field of neurodegeneration and more specifically for Parkinsin's disease.

ALT This is a graphic saying repurposing has been equally promising as de novo drug discovery in the field of neurodegeneration and more specifically for Parkinsin's disease.
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