Rett UK

14/10/2026

Save money AND raise money for Rett UK

Our wonderful supporter Nicola is a Utility Warehouse Connector, and every time someone switches their household services through her, Rett UK receives a donation.

Nicola is close to the Rett community: her friend Debbie's daughter, Olivia, lives with Rett syndrome. Rett syndrome is a rare genetic disorder that affects mainly girls, and people with Rett may never walk or talk and need 24/7 care for life.

* Save money on your household bills
* Support Rett UK with every successful switch
* No extra cost, no fees and no hidden costs

For once, raising money doesn't mean spending more! Scan the QR code or visit uw.co.uk/ref/connector/CN-XVH8 for a free, no-obligation comparison.

14/10/2026

🪂 Sending a massive shoutout and good luck to Amy and Chris McGovern ahead of their brave skydive this weekend 🪂

Amy and Chris have chosen to take on this challenge in honour of their niece Grave, who was diagnosed with Rett syndrome at just 4 months old 💜

Amy explains: “Myself and Chris have decided to go wild and do a skydive for our beautiful Niece Grace. As many of you are aware, at just 4 months old Grace was diagnosed with Rett syndrome. Rett UK have been such a huge support to our family and have helped in so many ways. We want to raise awareness and funds for Rett UK to help Grace and other families living with Rett syndrome."

So far Amy and Chris have managed to raise over £1,000!! The support from their family and supporters means a great deal and will enable Rett UK to continue providing support to Grace and many others like her 🥰

You can read more of their story and donate to their fundraising page via the link below:
🔗 https://www.justgiving.com/fundraising/amy-mcgovern2026

Plus, if you're in the Lincoln area on Saturday 17th October, why not pop along and show your support in person 🌟

Good luck to you both, and thank you for taking on this challenge for Rett UK 🍀

13/10/2026

A student who spells out words by blinking has been told they can’t sit their exam.

You can read the BBC story here: https://www.bbc.co.uk/news/articles/c6zxj8grer7ro

Not speaking is not the same as not knowing. Many people with Rett syndrome use their eyes to communicate. With the right support, they can show exactly what they understand.

This morning, Tracey from our communications team spoke about this on BBC Radio Scotland Breakfast. Thank you, Tracey. You can listen here (she’s on at 2:36): https://www.bbc.co.uk/programmes/m0032qyf

Every young person deserves a fair chance to show what they can do. Exams should fit the person, not the other way round.

Romi Loffler is battling to take her history exam with reasonable adjustments allowing for her condition.

12/10/2026

💜 October Awareness Campaigns Around the World 💜

The Rett community around the world is getting busy 🌍
Here's what our friends are doing this month, and how you can join in:

🇺🇸 International Rett Syndrome Foundation: "Know Rett. See the person. Know the story."
The International Rett Syndrome Foundation's 3rd annual Purple Out for Rett runs 16–18 October. Wear purple on Friday 16th, light up your home, business or a local landmark in purple, and share your photos all weekend.
➡️ https://www.rettsyndrome.org/get-involved/raise-awareness/

🇪🇺 Rett Syndrome Europe: Rett Forum 2026, Madrid
Next month RSE brings together 50–60 experts from 30+ countries for the first pan-European meeting on standards of care for Rett syndrome. It's a big step towards better, more consistent care wherever families live.
➡️ https://rettsyndrome.eu/

🇬🇧 Reverse Rett: Do One Thing
Reverse Rett's Do One Thing campaign asks supporters to take on one thing this October, whether that's a bake sale, a walk or a sponsored silence, to raise awareness or funds.
➡️ https://www.reverserett.org.uk/campaign/do-one-thing/

Wherever you are, there's a way to get involved! Wear purple, share a story, or do one thing, and help make Rett impossible to ignore 💜

12/10/2026

💜 What’s Happening at Rett UK This Week? 💚

Let’s take a look at what we’ve got coming up this week 👀
Make sure to mark these events in your calendars so you don’t miss out, and please share this post with anyone you think would like to attend 🥰

All Ages Peer Group 💻
🗓️ Wednesday 14th October
⏰ 13:50 - 14:30
🔗 Teams: https://teams.microsoft.com/l/meetup-join/19%3ameeting_Y2U2NjgzZGMtZTM0Zi00MzA5LWJlMjgtZTdhMWIzY2IzMmZj%40thread.v2/0?context=%7b%22Tid%22%3a%22e9c381c1-2782-48be-82fb-16b5359f0399%22%2c%22Oid%22%3a%227c788a7a-2b19-4466-afeb-09ed3fbaa284%22%7d
🚨 Brand new time and day 🚨

Schools Session 📚
🗓️ Wednesday 14th October
⏰ 15:10 - 16:00
🔗 Register Your Place: https://us02web.zoom.us/meeting/register/tArq-dBcQSCbcnApBrqeJw

Peer Group for Adults 👥
🗓️ Thursday 15th October
⏰ 19:00 - 20:00
🔗 Teams: https://teams.microsoft.com/l/meetup-join/19%3ameeting_YjYzZGJmODYtOTA1Ni00M2M1LWJlMGMtNWNmYzc1ODkzMDU0%40thread.v2/0?context=%7b%22Tid%22%3a%22e9c381c1-2782-48be-82fb-16b5359f0399%22%2c%22Oid%22%3a%227c788a7a-2b19-4466-afeb-09ed3fbaa284%22%7d

Rett Gents 🗣
🗓️ Thursday 15th October
⏰ 20:00 - 21:00
🔗 Teams: https://teams.microsoft.com/l/meetup-join/19%3ameeting_NTExZGQxNzEtNGY2Zi00YzA4LWE3ODItYWQzNGM5Mjg2MzJh%40thread.v2/0?context=%7b%22Tid%22%3a%22e9c381c1-2782-48be-82fb-16b5359f0399%22%2c%22Oid%22%3a%22981e2606-7069-43fc-b4d1-eb644c270f31%22%7d

N.West/N.Wales O&A Group 🍂
🗓️ Sunday 18th October
⏰ 10:00-13:00
📍 Delamere Forest, CW8 2HZ
🔗 Register Your Place: https://forms.cloud.microsoft/e/Z2gsShmbnq

🚨 Please note, sign-up forms for this week's Out & About Groups close at 15:00 (3pm) Thursday 15th October 🚨

--
You can find links to all our events here too:
🔗 linktr.ee/rettuk

Any questions please get in touch!
We hope you have a lovely week 💜💚

09/10/2026

🎉 Don't Miss Rett UK's 1:1 Virtual Communication Clinics In October 🎉

As October Awareness is all about learning all about Rett syndrome, why not try something new by scheduling a slot at one of our 1:1 Virtual Communication Clinics? Now's the perfect opportunity to discuss any questions or topics you're wanting extra advice with, so don't miss out!

Our communication team members on hand for October are Carly and Rob 🌟

We have 6 slots per month available for you to book a personalised, individual 30 minute sessions to discuss anything you like with our team, whether it’s guidance, support, or questions about communication. You can choose the team member who best fits your needs and pick a time that works for you 💜

This time, our team members are:

Carly Hynes
💫 Interests: Communication Partners, Modelling
⏰ Available Times: Wednesdays 16:00-17:00 and Thursdays 20:00-21:00
📧 Contact: [email protected]

Rob West
💫 Interests: Numeracy, Maths, Making Learning Accessible
⏰ Available Times: Daily week beginning Monday 26th October 09:00-16:00
📧 Contact: [email protected]

Check out their profiles in this post to learn more about their special interests 🥰
‼️ Then to book your slot, simply email the team member via the email address above and please be sure to CC in: [email protected] ‼️

Act quick before the sessions are fully booked 🗓️ Take this opportunity to get personalised support from our team, we can’t wait to speak with you!

07/10/2026

🎨 COLOURS BEYOND WORDS
An international celebration of creativity and expression

We’d love our UK Rett community to be part of it! 💜

People living with Rett syndrome from around the world are creating artwork for a special international exhibition celebrating creativity, self-expression, and communication beyond spoken language.

🎨 GET CREATIVE!

If your family member with Rett syndrome would like to take part, simply create a 🖌️ Drawing or painting

There are no rules about what to create.
It can be anything that allows the person to express themselves through colour and art, in whatever way feels meaningful to them.

📸 HOW TO TAKE PART

Take a photo or scan of the finished artwork and email it to: [email protected]

⏰ SEND YOUR ARTWORK BY 10th OCTOBER 2026

💜 Let’s get the UK Rett community represented alongside artwork from around the world!

05/10/2026

📣 Your child may not use words. But they have plenty to say. 📣

Our research with the University of Reading starts with one simple idea: ask people with Rett syndrome what they think.

Here is what is happening:

- In March, Abigail Davison-Hoult and Tracey Campbell from Rett UK's Communication and Education team held a special day. People with Rett syndrome came together to tell us what matters most to them.
- Since then, our Research Lead Gill Townend has set up small online groups. People with Rett syndrome, parents and speech and language therapists share what helps communication and what doesn't. These groups run until March 2027.
- What we learn will help create new training for speech and language therapists. That means more people who understand your child.
- Rett UK's Tracey Campbell starts her PhD this month, looking at how people with Rett syndrome can have more say in their own lives.

Come and hear what people with Rett syndrome told us. Join our online event TODAY Monday 5th October, 1pm to 4.30pm 🌟

Can't make it live? All of the talks will be recorded, subtitled in various languages and made available for replay shortly!

🔗 Register here: https://forms.cloud.microsoft/e/M5ZhKTLzBu

💻 Plus, you can read this full Research Update Article on our website:
🔗 https://www.rettuk.org/your-child-has-something-to-say-our-research-is-listening/

04/10/2026

🏃 Shoutout to Peter who will be taking part in the Clarendon Marathon today for 🏃

Peter has chosen to take on this challenge in honour of Cherry, who has been diagnosed with Rett syndrome 💜

Jemma explains: “When she started to speak as a young toddler, the array of words and sounds she parroted and learnt was amazing. She was so bright and full of beans! To see her mobility and speech gradually decline was confusing and heartbreaking. It took a long time for us to eventually receive the news that she had Rett syndrome. I’m so proud of Pete for raising funds for this awesome charity”

You can read Peter's full story and donate to his fundraising pages via the link below:
🔗 https://www.justgiving.com/page/peter-wyatt-1788610461202

Good luck to you both, and thank you for taking on this challenge for Rett UK 🍀

03/10/2026

There are no borders with Rett syndrome. 💜

Today Rett UK is in Mullingar for the Rett Syndrome Ireland family weekend. Families from Northern Ireland and the Republic are together in one room, sharing the same hopes and the same questions.

Rob, our CEO, is talking about three things.

What's new in research
Trofinetide (sold as Daybu) was approved across the EU in August, including in Ireland for ages 5 and up. Northern Ireland follows UK rules, and there is no way to get it in the UK yet. We are still pushing for one. Two gene therapy trials have now treated everyone taking part, and results are due in 2027.

Communication
It's never too early or too late. Building communication now means people with Rett are ready to get the most from any new treatment. We lend eye-gaze devices with expert support. We run Communication Partner training that families outside the UK can join. And we hold online social sessions for people with Rett every month.

Support
Our Family Support team helps with school, hospital stays, benefits, social care, growing up and bereavement. Anneka has just joined us as Outreach Worker, to reach families we haven't been reaching. We also have free one-to-one online clinics, specialist Rett clinics and a new Welcome Pack. There are Facebook groups too, for newly diagnosed families, parents of adults and bereaved parents.

Thank you to Declan and everyone at Rett Syndrome Ireland for having us. Working together means families get help wherever they live.