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Rett News Issue 3 2015
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Rett News Issue 2 2015

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Audio Recording of Rachael Stevenson/Stuart Cobb Presentation

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Research Made Easy: Rachael Stevenson and Stuart Cobb

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H.Truss/N.Tomlinson: Supported Living and Personal Health Budgets Audio Recording

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Hilary Truss: Supported Living Presentation

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N.Tomlinson: Personal Health Budget Presentation

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Question Time with our Expert Panel: Audio Recording

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Mike Kerr: Primary Care and Rett Syndrome Presentation

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Philip Warford: Mental Capacity, Power of Attorney and Court of Protection Presentation

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Rett News Issue 4 2015

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Useful Web Site Links

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Everything that is going on at Rett UK.

Rett UK

Rett UK10 hours ago

Don't miss our first "Online Peer Session" of 2025 👥
An opportunity for people with Rett syndrome of any age, to come together, connect, have fun and communicate!

This session is taking place:
🗓 Wednesday 15th January
⏰ 13:00 - 14:00
🔗 On Zoom: https://us06web.zoom.us/j/85195437474?pwd=9Zjat03ujh4JaxQRueGvRyDVMtZpQW.1

These sessions will be facilitated by our RCCs, with activities and topics steered by the interests of the group!

There is no need for a formal communication system to be in place, any form of communication can be used (e.g. no tech, paper-based, eye gaze device). And there is absolutely no pressure or requirement to speak up - you can just come along and listen.

This is open to people with Rett syndrome of ALL ages, so you could even join in from school. Each person with Rett syndrome needs to be accompanied by a supporter.

To join our session tomorrow 15.01, simply click on the following link:
🔗 https://us06web.zoom.us/j/85195437474?pwd=9Zjat03ujh4JaxQRueGvRyDVMtZpQW.1

🚨 Please note, these sessions will be taking place every four weeks, so the next session will take place on Wednesday 12th February (using the same zoom link) 🚨

If you have any questions or issues please get in touch 💜💚

#RettUK #RettSyndrome #OnlinePeerGroup

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Rett UK4 days ago

Are you a Speech and Language Therapist or other professional who supports communication? We Need Your Help 📢

Can you take a moment to complete a short survey as part of our new project focusing on ‘Communication Support for People with Rett Syndrome in the UK’? 📝

If you live in the UK, you could answer these questions and more in our survey:
➡️ Do you work with children or adults with Rett syndrome?
➡️ What shapes your practice?
➡️ Where do you find support and guidance?
➡️ Have the Rett Syndrome Communication Guidelines helped you or have you not heard of them?
➡️ Have you participated in any of Rett UK’s communication activities or not felt they were for you?
➡️ What works and what would you change?

This project is led by Dr Gill Townend, lecturer at the University of Reading, research lead here at Rett UK and lead author of the Rett Syndrome Communication Guidelines.

Full details can be accessed via the link below or by scanning the QR code in the infographic. The survey can be completed on your computer or mobile device 🖥 🔗 https://redcap.link/5mpdfxgj

🚨The closing date for this survey is: Monday 20th January 2025.

If you have any queries, please contact: g.townend@reading.ac.uk

#RettUK #RettSyndrome #UniversityofReading #Survey #CommunicationSupport #CommunicationGuidelines

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Rett UK7 days ago

🗓️ What's Happening at Rett UK in January - Monthly Schedule 🗓️

Happy New Year to everyone 🥳 We hope you've had a peaceful start to the year and are ready to take on new challenges in 2025! We're back and ready for a year full of events and support, so let's take a look at what we've got coming up in January 👀

🚨 We’ve made some changes to our Communication Events schedule for 2025! Be sure to take not of the different sessions we run as they repeat the same weeks each month (and using the same zoom links too) 🚨

More information on each event will be posted accordingly. But for now, be sure to mark these events in your calendar so you don't miss anything 🗓️

You can find the access links to all our events via our Linktree (in bio) as well as any additional support, fundraising and resources links!
🔗 https://linktr.ee/rettuk

Got any questions, let us know below 💜 💚

#RettUK #RettSyndrome #MonthlyCalendar #WhatsHappeningAtRettUK #JanuarySchedule

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Rett UK1 week ago

📢 Are you a parent/carer of a child or adult with Rett syndrome? We Need Your Help 📢

Can you take a moment to complete a short survey as part of our new project focusing on ‘Communication Support for People with Rett Syndrome in the UK’? 📝

If you live in the UK, you could answer these questions and more in our survey:
➡️ Where do you find advice and support for communication?
➡️ What AAC systems and strategies have been recommended?
➡️ What are your aspirations and expectations?
➡️ Have the Rett Syndrome Communication Guidelines helped you or have you not heard of them?
➡️ Have you participated in any of Rett UK’s communication activities or not felt they were for you?
➡️ What works and what would you change?

This project is led by Dr Gill Townend, lecturer at the University of Reading, research lead here at Rett UK and lead author of the Rett Syndrome Communication Guidelines.

Full details can be accessed via the link below or by scanning the QR code in the infographic. The survey can be completed on your computer or mobile device 🖥
🔗 https://redcap.link/zjr6lwr3

🚨 The closing date for this survey is: Monday 20th January 2025.

If you have any queries, please contact: g.townend@reading.ac.uk

#RettUK #RettSyndrome #UniversityofReading #Survey #CommunicationSupport #CommunicationGuidelines

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Rett UK1 week ago

👥 Will you be joining our first Modelling Session of 2025 tomorrow? 👥

Don't miss this opportunity to meet with our Communication Team through an interactive, online session! Focussing on different topics and learning more about modelling in both TD Snap, Super Core and paper based communication resources (as well as any other system you may be using) 💻

The next session is taking place TOMORROW:
🗓 Tuesday 7th January
⏰ 12:00 - 13:00
🔗 On Zoom: https://us06web.zoom.us/j/81218346293?pwd=bc7IfnHvQy4eUw7dgutiKdhMg9aqJq.1

🚨 Please note: our Modelling sessions will now be taking place on the first Tuesday of each month, and the Zoom link will remain the same for each session 🚨

Each month there will be a different topic and during the session we will discuss where you will find the words in both TD Snap and Super Core as well as any other system you may be using (e.g. paper based communication resources).
💚 This month's topic is "Initiating Communication" 💚

📢 These are interactive sessions so participants should expect to join in with the discussions 📢

To join the session, simply click on the zoom link below (no need to pre-register) ⬇️
🔗 https://us06web.zoom.us/j/81218346293?pwd=bc7IfnHvQy4eUw7dgutiKdhMg9aqJq.1

Any questions please get in touch 💜

#RettUK #RettSyndrome #ModellingSessions #Modelling

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Rett UK1 week ago

Kickstart 2025 by joining our next round of Communication Partner Training 🎉

Tuesday 14th January: 10:00-14:00 AND Tuesday 11th February: 10:00-14:00

Don’t miss your chance to sign up and learn how to become an effective communication partner for the person you support with Rett syndrome 💜

Read the full information in the post attached 📝

🚨 Registration Deadline: Monday 6th January at 5pm (17:00 GMT) 🚨

If you would like to join this training, all you need to do is click on the link below to complete the registration form:
🔗 https://forms.office.com/e/nSgqjQNK4S

🚨 Please note you must attend BOTH sessions of this training. You cannot attend one without the other 🚨

Any questions, just comment below 👇

#RettUK #RettSyndrome #CommunicationPartnerTraining #EffectiveCommunication #Training

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Testimonials

Joanna Tomlin

Exceptional Support!

Exceptional support! I have phoned Rett UK numerous times and have always found the staff informative, professional, with the ability to empathise. I am always left with the feeling that I'm not alone in my struggle to secure the best for my daughter. Rett UK go above and beyond and I can't thank them enough!

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Elizabeth Allen

Caring and sharing. Informative and supportive. Great stuff for all those families. X

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Rett News Issue 3 2015

Rett News Issue 2 2015

Audio Recording of Rachael Stevenson/Stuart Cobb Presentation

Research Made Easy: Rachael Stevenson and Stuart Cobb

H.Truss/N.Tomlinson: Supported Living and Personal Health Budgets Audio Recording

Hilary Truss: Supported Living Presentation

N.Tomlinson: Personal Health Budget Presentation

Question Time with our Expert Panel: Audio Recording

Mike Kerr: Primary Care and Rett Syndrome Presentation

Philip Warford: Mental Capacity, Power of Attorney and Court of Protection Presentation

Rett News Issue 4 2015

Useful Web Site Links

Social Hub

Everything that is going on at Rett UK.

Rett UK

Latest tweets

Testimonials

Joanna Tomlin

Exceptional Support!

Elizabeth Allen

Elizabeth Allen

Becky Jenner

Gwenda Dimmock

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