UsherVibe is about people who are living with Usher syndrome (hearing loss Retinitis Pigmentosa) and Deafblind people. Bringing us in touch is what we do.
Joined December 2015
- Tweets 690
- Following 191
- Followers 410
- Likes 399
16 Photos and videos
UsherVibe retweeted
Support petition to improve registration, regulation and oversight of Deafblind interpreters/communicator guides (BSL) limpingchicken.com/2025/02/1…
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UsherVibe retweeted
12 Feb 2025
There is a crisis in the #Deafblind community in the UK. There is NO regulations for Communicator-guides which they use or try to use. Deafblind people have had enough and taken action.
Please sign the #petition and repost.
change.org/p/improve-registr…
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UsherVibe retweeted
11 Feb 2025
Currently NO regulations for Deafblind Communicator-guides.
This is causing acute difficulties and vulnerability.
#Deafblind people have had enough and taking action to get organisations and bodies to rectify this.
Please sign this petition and repost.
change.org/p/improve-registr…
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26 Sep 2024
#Deafblindness was recognised. by the UK government in 1989 as a distinct disability (not deaf blind). Currently it is not recognised by the Scottish government. What's the problem? @deafblindscotland is leading the push for recognition.
dbscotland.org.uk/2024/03/25…
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14 Jul 2024
As #Euros2024 comes to its climax with England's involvement spare a thought for those fans who have #UsherSyndrome who are profoundly deaf and no longer have the vision to watch due to #RetinitisPigmentosa (RP). RP is so cruel there has to be a cure. #Deafblindness
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UsherVibe retweeted
"If you're applying for a new job and you're deafblind, just go for it...There is help out there."
Administrator Diane gained confidence due to tech via #AccessToWork to aid #UsherSyndrome.
For support & info: sightforsurrey.org.uk/news/i…
@DeafblindUK #DeafblindAwarenessWeek (1/2)
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UsherVibe retweeted
28 Jun 2024
Many good things and causes for celebration during #DeafblindAwarenessWeek
THERE IS ONE EXCEPTION!
After 41 years @sensecharity are ending support for #deafblind people who have #UsherSyndrome by closing Sense Usher Service. Shocking, isn't it?
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UsherVibe retweeted
27 Jun 2024
#DeafblindAwarenessWeek
41 years ago pioneer Mary Guest started #UsherSyndrome support at Sense.
That was a game changer for Ushers.
Today specialist support is as vital as ever.
Yet @sensecharity are going to close Sense Usher Service.
Mary could be turning in her greave!
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UsherVibe retweeted
26 Jun 2024
This week #DeafblindAwarenessWeek
Yet @sensecharity are closing Sense Usher Service!?
Where will people with #UsherSyndrome, their families, carers go now for vital support?
Are Sense no longer the charity for the #deafblind they formed for?
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17 Apr 2024
First ever storyline with Usher syndrome character on TV upcoming in @bbceastenders
#UsherSyndrome #Eastenders
uk.style.yahoo.com/eastender…
[Spoiler]
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29 Mar 2024
In the midst of our struggles with Usher syndrome we'd better have a laugh and feel a bit better! ;)
#UsherSyndrome #laughter usher-syndrome.org/resources…
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31 Oct 2023
We run a UK-based community group in Facebook for those living with Usher syndrome and deafblind and also those connected with them. Come and join us! We are all in this togethe. This group brings us together.
#UsherSyndrome #Deafblind
facebook.com/groups/56813175…
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11 Apr 2023
What are the symptoms of #UsherSyndrome?
Emmerdale TV actors Mark Jordan @JoepopProds and Laura Norton @lawrencenotrin following their 2 children diagnosed with this rare genetic disease are actively raising awareness. We are all in this together.
walesonline.co.uk/news/healt…
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UsherVibe retweeted
12 Mar 2023
We run UK- based Usher Syndrome and Deafblind community group on Facebook.
#UsherSyndrome #Deafblind
facebook.com/groups/56813175…
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22 Mar 2023
Good to see researchers trying anything that could lead to treatment of #UsherSyndrome. This one done by @ucl in which #StemCells from patient with Usher to develop mini-eyes.
aop.org.uk/ot/science-and-vi…
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