Reverse Rett

Reverse Rett Accelerating treatment for Rett syndrome

Reverse Rett is a patient advocacy and research organisation focused on delivering treatments and a cure for Rett Syndrome to everyone affected.

A big shout out to the wonderful Reverse Rett team taking on the Royal Parks Half Marathon tomorrow and the beautiful ch...
10/10/2026

A big shout out to the wonderful Reverse Rett team taking on the Royal Parks Half Marathon tomorrow and the beautiful children who have inspired them to do it 😍 💜

Over £10,000 raised so far 🤩 Thank you all so much 💜

Rett Syndrome Awareness Month: What are we working on at Reverse Rett?Throughout October, we're sharing some of the work...
09/10/2026

Rett Syndrome Awareness Month: What are we working on at Reverse Rett?

Throughout October, we're sharing some of the work happening behind the scenes at Reverse Rett, and why it matters for children and adults living with Rett syndrome.

First up: Our Medical and Scientific Advisory Board (MSAB).

Earlier this year, we brought together a group of leading clinicians, scientists and advocates with expertise in Rett syndrome and the many complex medical challenges it brings.

Chaired by Dr Daniel Lumsden, Consultant Paediatric Neurologist at Evelina London Children's Hospital, the Board helps ensure that the decisions we make and the issues we campaign on are informed by the best available medical and scientific evidence.

So what does that mean in practice?

The Board is helping us focus on some important priorities:

Better healthcare: Advocating for improved access to specialist care, essential health checks and routine screening for people with Rett syndrome, wherever they live in the UK.

Preparing for new treatments: Helping us understand emerging therapies and the evidence needed to make sure people with Rett syndrome can benefit from scientific progress.

Making sure Rett is understood: Ensuring that the full severity, complexity and lifelong impact of Rett syndrome are recognised when decisions are made about healthcare, treatments and NHS resources.

Reliable information: Helping families and professionals navigate an increasingly complicated world of online health information and artificial intelligence.

Why does this matter?

Because developing treatments is only part of the challenge.

We also need to make sure people with Rett syndrome receive the healthcare they need today, that their needs are properly understood, and that when new treatments become available, no one is left behind.

Our Medical and Scientific Advisory Board is an important part of making that happen.

Read more about the Board and its members here:

https://www.reverserett.org.uk/carer-advice/reverse-rett-establishes-medical-scientific-advisory-board/

COLOURS BEYOND WORDS – Every Colour Tells a Story 🌈Sometimes, words aren't needed to tell a story. Sometimes, a splash o...
09/10/2026

COLOURS BEYOND WORDS – Every Colour Tells a Story 🌈

Sometimes, words aren't needed to tell a story. Sometimes, a splash of colour, a handprint or a simple brushstroke can express more than words ever could. 💜

We are delighted to share Colours Beyond Words, a wonderful international art initiative organised by Reverse Rett Greece, celebrating the creativity, individuality and different ways of communicating of children and adults living with Rett syndrome around the world. 🌍

Every artwork tells a story. Every colour is a different way of communicating.

The first exhibition will take place on 12 & 13 October 2026 at Papatzikou Art Gallery in Veria, Greece, as part of October's Rett Syndrome Awareness Month.

And the best part? Families can take part from anywhere in the world 😍

Participation is entirely digital, meaning there is no need to send original artwork to Greece. Families simply submit a photograph or digital image of their artwork through the online submission form, and the original artwork stays safely at home with its creator.

Who can take part?

Children and adults living with Rett syndrome, of all ages and abilities, from every country are warmly invited to participate.

There is no competition and no artistic experience is needed. Whether through painting, handprints, collage, eye-gaze, supported creativity or any other form of artistic expression, every contribution is welcome and every piece tells its own unique story 💜

The hope is that this first exhibition will be just the beginning, with the artwork eventually becoming part of a travelling international collection, sharing the creativity and voices of people living with Rett syndrome with communities around the world.

This is such a lovely opportunity for our Rett community to come together, celebrate individuality and show that communication and creativity go far beyond words. 💜

Would you or your family like to get involved?

You can find all the information, participation guidelines and the online submission form here:

👉 https://reverserettgreece.gr/colours-beyond-words/

Please share with other Rett families who might like to take part. We'd love to see our UK Rett community represented! 🇬🇧💜

Because expression does not end where words do. Sometimes, it begins with colour 🌈

A fantastic article in the Leicester Mercury about David and Georgia, one of the Reverse Rett team running the Royal Par...
08/10/2026

A fantastic article in the Leicester Mercury about David and Georgia, one of the Reverse Rett team running the Royal Parks Half this weekend 😍 Perfect month to be raising awareness 🤩 💜

“I’ve always wanted to run the Lon­don Mara­thon inspired by my beau­ti­ful daugh­ter Geor­gia for Reverse Rett.

I’ve not been lucky enough to get a bal­lot place in 12 attempts so doing this is almost the next best thing. It’s also nice that I’m doing it as part of ­Syn­dromeAware­ness­Month too.”

David Wainwright, Georgia's dad 💜

You can read the full article at the link below 👇

https://www.pressreader.com/uk/loughborough-echo/20260930/282041924061006

🏴󠁧󠁢󠁳󠁣󠁴󠁿 The countdown is on to the Reverse Rett Scottish Gala 💜On Saturday, 24th October, we’ll be gathering at the Ape...
06/10/2026

🏴󠁧󠁢󠁳󠁣󠁴󠁿 The countdown is on to the Reverse Rett Scottish Gala 💜

On Saturday, 24th October, we’ll be gathering at the Apex Hydro Hotel in Dunblane for what promises to be another very special evening — and we’d love your help to make it as successful as possible.

We’ve already had some AMAZING auction and raffle prizes donated, including this incredible Thermomix TM6 kitchen appliance, donated in honour of Emily 😍

Every auction and raffle prize makes a difference. The generosity of our supporters helps us raise a huge amount at the Gala each year, with every penny helping us continue our mission💜

Could you or your business donate a prize? 🎁

Whether it’s an experience, voucher, product, service or something completely unique, we’d love to hear from you. Please contact [email protected] if you can help.

A huge thank you to Emily’s auntie, Marinela Popa for this incredibly generous donation. 💜

We also have just a few Gala tickets remaining!

Join us on 24th October for a brilliant night while helping us raise as much as possible for Reverse Rett.

Get your tickets here 👇

https://www.eventbrite.co.uk/e/reverse-rett-scottish-gala-tickets-1985709649014

And please SHARE this post — you never know who might be able to donate a prize or join us on the night! 🙏💜

"Over the weekend of 12th & 13th September a cohort of Duncalfes and an Alfred exceeded 200km running, swimming, cycling...
06/10/2026

"Over the weekend of 12th & 13th September a cohort of Duncalfes and an Alfred exceeded 200km running, swimming, cycling and walking! We asked for friends and family to encourage our efforts with a donation to Reverse Rett, in support of our granddaughter Rosalie.

We undertook the New Forest marathon, half-marathon, 10km and 5km woodland walk events, the Evian triathlon (Olympic event, 52km) and twice 21 miles in preparation for the Cheshire Marathon.

A further 15km was added by our Cheshire-based son and his two sons, and another 5km by our East Texas based son and his dog - in their heat and humidity!

Our total distance came to just under 218km, but Phil intends to add to that next month with the Beat Box Hill 50km event!"

Nicki Duncalf 💜

Wow! What a worldwide effort guys 💪 Thank you all for running together, but apart, in support of Rosalie 😍 💜

https://www.justgiving.com/page/duncalfes-for-reverse-rett

Rett Syndrome Awareness Month 💜Deep appreciation to our ambassador, Virginia Munoz who stood up at the JCI Scotland Nati...
05/10/2026

Rett Syndrome Awareness Month 💜

Deep appreciation to our ambassador, Virginia Munoz who stood up at the JCI Scotland National Conference and told the delegates all about her daughter, Valentina and Reverse Rett 😍

Virginia, we are truly blessed to have your support 🙏

Address

Reverse Rett, Beehive Lofts, Jersey Street
Manchester
M46JG

Telephone

+441615525001

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