Rett UK

🚨 Today, we're proud to be joining 45+ other organisations in supporting the briefing for @MikeysWish_VDA's #InvestInSLT petition debate. ▶️ https://lnkd.in/eSA5bEBW 📺 You can watch the debate from 4:30pm on this link: https://lnkd.in/eSRv2PCT

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’? 📝 🚨 Survey deadline extended to Monday 3rd February at 12:00 noon! Follow this link to complete it: 🔗 https://lnkd.in/eWmD3wBA 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://lnkd.in/eWmD3wBA 🚨 The closing date for this survey has been extended to Monday 3rd February at 12 noon 🚨 If you have any queries, please contact: g.townend@reading.ac.uk #RettUK #RettSyndrome #UniversityofReading #Survey #CommunicationSupport #CommunicationGuidelines

📢 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’? 📝 🚨 Survey deadline extended to Monday 3rd February at 12:00 noon! Follow this link to complete it: 🔗 https://lnkd.in/emrB7E9V 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://lnkd.in/emrB7E9V 🚨 The closing date for this survey has been extended to Monday 3rd February at 12 noon 🚨 If you have any queries, please contact: g.townend@reading.ac.uk #RettUK #RettSyndrome #UniversityofReading #Survey #CommunicationSupport #CommunicationGuidelines

📢 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://lnkd.in/emrB7E9V 🚨 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

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://lnkd.in/eWmD3wBA 🚨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

We are deeply saddened to share that the third child treated with Neurogene’s NGN-401 gene therapy for Rett syndrome has passed away. Our thoughts and deepest sympathies are with the family during this incredibly difficult time. The global Rett syndrome community stands with them as they mourn their precious daughter. This loss has raised understandable concerns about the future of the gene therapy program. Neurogene has reaffirmed its commitment to finding effective treatments for those affected by Rett syndrome. The FDA has approved the continuation of the NGN-401 trial at a lower dosage, where the severe immune reaction linked to the AAV delivery method has not been observed. Read more - https://lnkd.in/ehXs2p-c

🔗 Update from Taysha Gene Therapies on their Rett syndrome gene therapy! Check it out here: https://lnkd.in/guNTWxcf #TayshaGeneTherapies #RettSyndrome #GeneTherapy

Your amazing Daryl 💜 💜 !! https://lnkd.in/d9sMz7zv

Will you be joining our next "Communication Partner Drop-In Clinic"? 👥 A chance for anyone supporting an individual with Rett syndrome to get their communication questions, big or small, answered! The next session is taking place: 🗓 Thursday 2nd May ⏰ 12:00 - 13:00 🔗 On Zoom (link below) If you support someone with Rett syndrome and have any questions about their communication – big or small – this is an opportunity for you to get answers. It's also a time to share any communication highs/lows. No need to register or stay for the full time, just drop in during the clinic hour and ask our RCCs for help. It doesn’t matter what stage of communication the person with Rett syndrome is at – there may be nothing in place yet or you may be a bit further on and feeling stuck. No question is too silly or scary! To join our session on Thursday (02.05), simply click on the following link: 🔗 https://lnkd.in/epPV-UVU These sessions run twice monthly so if you can't attend this clinic the next one is taking place on Tuesday 20.05 at 20:00. If you have any questions or issues please get in touch 💜💚 #RettUK #RettSyndrome #CommunicationPartnerDropInClinic

We’re supporting Newlife the Charity for Disabled Children’s new report, Fight For Our Future, which reveals the bleak situation facing disabled children and their families. Did you know? Over the last year, 60% of local authorities have seen assessment waiting lists grow, while nearly half have reduced their equipment budgets. They are urging government to #ACTNow Please read and share the report: 🔗 https://lnkd.in/eSRgyKdi #RettUK #RettSyndrome