Reverse Rett

"Doing the Highland Fling was terrifying! I’ve literally never been as scared as I was when I was about to jump in my whole life. No exaggeration.

BUT.

It was an amazing experience and I’m so glad I did it. Now that I’ve done it once, I could probably do it again 😂 but not for at least a year …. My legs are still shaking!

Collectively, we have raised an amazing £1,470 for Reverse Rett in honour of my Isla.

I want to say a HUGE thank you to Adele Noller, Steven Walters, Tracey Morris and Craig James William Tetlow for making this weekend such a success. I loved the support we gave to each other throughout, and that we all shared each other’s excitement and pride for one another once it was over!

I am planning on a Skydive and walking Hadrians Wall next year 💪"

Kylie Jones, Isla's mum 💜

Wow! Go Team Isla. Thank you all so much for taking on something so awesome in honour of Isla, a girl who inspires so many people 😍 Climbing mountains? yes, bungee jumping? It's a hard NO from us 😂

https://www.justgiving.com/page/kylie-jones-1774595411404

Musician, David Ford is a complete one off. He has no connection to anyone with Rett syndrome yet has been fundraising for Reverse Rett for over a decade 😍

We asked his permission to use one of his songs for our London Gala video in 2014. After saying yes we could, he researched Rett syndrome, a condition he'd never heard of and what we were doing to try to help people living with it.

He's been with us ever since and has become part of the team 💜

He's done countless concerts which have raised well over £100,000 and even wrote a song for us. If you haven't seen it then check it out at the link below but have a tissue ready 🥲

https://youtu.be/fbxe--a08TU?si=KY-wwX77WwIvcElN

Now he's taking on the London to Brighton bike ride along with his amazing wife, Emma. Below she tells us why 😍

"We are very excited to be taking part in the London to Brighton bike ride 2026 to raise money for a charity that we very much believe in, Reverse Rett .

David has been fundraising for Reverse Rett for over 10 years and we are both so proud of the amazing work the charity is undertaking."

Emma Ford 💜

Thank you, Emma and David for everything you've done and continue to do for us. We all hope the wind is behind you all the way to Brighton 🚴🚴‍♂

https://www.justgiving.com/page/emma-ellis-10

The 3 Peaks Challenge is brutal so hats off to Conor, Jon, Matt, Scott and Liam who recently completed it 💪😍

They took on Yr Wyddfa, Scafell Pike and Ben Nevis in honour of Jon's daughter, Harper 💜

Thank you so much Team Harper. As parents ourselves we know how much it will mean to Jon to have such awesome support 🥰

You can watch a video of the boys on their epic challenge at the link below 💜

https://youtu.be/Stvv04iFVlw?si=ZKVaoUXPbKs_IukQ

It's just 7 days till Small Charities Week opens. This is a chance to generate FREE money for Reverse Rett with any donation you make 😍

Between Midday on 22nd June until Midday on the 29th June any donation made to Reverse Rett will be DOUBLED!

Callie was recently diagnosed with Rett syndrome. This diagnosis is devastating and often families feel totally lost and alone.

This campaign will help us to recruit our first Family Advocacy and Care Navigation Lead to help families with anything they need navigate the often hostile systems that all our families have to face 🥲

Families like Callie's, you can read her story and our plans to help families by clicking the link below 💜 Please share and help us reach our £20,000 target 🙏

https://www.reverserett.org.uk/you-just-feel-lost-why-were-fundraising-for-an-advocacy-support-worker/

"Tomorrow a group of 10, including myself are swimming a mile of Lake Windermere in the Great North Swim 🏊🏊‍♂🏊‍♀

That is the same as 64 Lengths of a pool. We are doing this to raise money for Reverse Rett and in honour of Scarlett my daughter/and the many other children and adults affected by Rett Syndrome.

The idea of the swim came about when I wanted to raise money for Reverse Rett and do something that would challenge myself and encourage people to empty their pockets and sponsor us.

My husband and eldest son agreed alongside my brother in law. I then mentioned it to a few friends who got on board with the idea and signed up to make our group of 10.

We have done a few practice open water swims as well as regular pool swims in preparation. We are hoping for good weather and calm conditions for the swim but will have to wait and see.

We have Scarlett on the sidelines smiling (possibly laughing) us on.

This swim is going to be a tough physical challenge but nothing to what Scarlett and others with Rett Syndrome face on a daily basis."

Becky Baumber, Scarlett's mum 💜

Wow! What a challenge 💪 Thank you Team Scarlett for your amazing support 😍 💜

https://greatnorthswim2026.enthuse.com/pf/becky-baumber

"On Sunday 23rd May 2027, I’ll be taking on a very special challenge — running the 22 miles from Ibrox Stadium in Glasgow to Rugby Park, home of Kilmarnock Football Club.

The run marks the 30th anniversary of one of the greatest days in Kilmarnock’s history — our unforgettable Scottish Cup victory in 1997, a match I was proud to play in and a moment that will live forever in the hearts of Killie supporters.

Thirty years on, I want to celebrate that incredible achievement in a way that can also make a real difference to people’s lives.

I’ll be raising funds for two charities that mean a great deal to me.

Reverse Rett supports families affected by Rett syndrome and helps fund vital research into treatments and ultimately a cure for this devastating neurological condition. My daughter Dionne lives with Rett syndrome, so this charity is very close to my heart.

The Killie Community is Kilmarnock Football Club’s partner charity and plays a huge role in supporting people across Ayrshire through health, wellbeing, inclusion and community programmes. Their work reaches people of all ages and backgrounds, using the power of football to improve lives every single day.

This run is about football memories, but it’s also about community, togetherness and giving something back.

I’d love for supporters, friends, runners and anyone connected to Kilmarnock Football Club to join me for all or part of the journey from Ibrox to Rugby Park as we celebrate 30 years since that historic Scottish Cup triumph.

I'd also love to see as many Reverse Rett t shirts on the route. It would be magical to have families who are living with Rett syndrome alongside me 😍

Whether you run, walk, donate or simply support along the route, your encouragement and generosity will help raise vital funds for two truly worthwhile causes.

There are already 130 people signed up and you can register your interest in taking part in the event by clicking on the link below, whether that means joining me for a short section of the route or tackling the full journey from Glasgow to Ayrshire.

Join me in celebrating one of the proudest moments in Kilmarnock FC history while helping create hope for others"

Mark 'Mavis' Reilly, dad to Dionne, Killie Hall of Famer and Reverse Rett Ambassador and Fundraising Manager 💜

https://kilmarnockfc.co.uk/news/run-with-reilly-to-rugby-park-2027

The London Landmarks Half Marathon is one of the UK's most popular running events, attracting thousands of runners each year and selling out incredibly quickly 😍

Reverse Rett have **10 guaranteed places** up for grabs in this iconic race. Taking runners past some of London's most famous landmarks, it's an unforgettable experience and a fantastic way to support families affected by Rett syndrome, just ask our runners that have made up our team for the past 2 years 🤩

Places are limited and demand is always high, so if you'd like to join Team Reverse Rett, don't wait too long – these spots will go fast!

Ready to take on the challenge? Get in touch with Mark Reilly at [email protected] or comment below and secure your place today 🏃🏃‍♂🏃‍♀ Please share this post with your running friends 🙏💜

"It was a privilege to support Reverse Rett on Sunday by completing "Roon the Toon" Kilmarnock 10k and raising £1500.

My thanks to all those that sponsored me and to our very own Killie legend Mark "Mavis" Reilly for his encouragement and support."

Don Bircham 💜

Huge thanks to Don, love the photo with Captain Conker, Kilmarnock FC's mascot 😍 Dionne is certainly a young woman who inspires so much support 💜

https://www.justgiving.com/page/don-bircham-4

Exciting news for the Rett syndrome community 💜

Neurogene has announced that all participants in the EMBOLDEN™ registrational trial of NGN-401 have now received treatment – a major milestone in the development of this potential gene therapy for Rett syndrome.

Neurogene have also enrolled more patients than originally expected with Rachel McMinn, Ph.D (Founder and CEO of Neurogene) saying that this was due to “significant unmet need and strong demand from the Rett syndrome community.”

Completing dosing is an important step on the journey towards understanding whether NGN-401 can become an approved treatment for people living with Rett syndrome.

While there is still work to do and more data to collect, this achievement represents real progress and renewed hope for families affected by Rett syndrome. Every milestone like this brings us one step closer to better treatments and, ultimately, our shared goal of reversing Rett.

We look forward to following the next stages of the trial and sharing updates with our community as they become available.

You can find out more by clicking the link below 🙏

https://www.reverserett.org.uk/neurogene-completes-dosing-of-patients-in-their-embolden-ngn-401-trial/

"Our cousin Georgia is our hero, she is a beautiful and intelligent young lady who was diagnosed with Rett syndrome, just before she turned 4.

We were completely heart broken but determined to do what ever we could for Georgia.

Georgia is now 16 and has faced challenges everyday of those 16 years. That is why we ran the Leamington Spa Half Marathon yesterday for Reverse Rett."

Eva Walters and Ben Read, Georgia's cousins 💜

Bravo, Eva and Ben 🥰 thank you so much, it's so lovely to see Georgia there to meet you at the end 💜

Reverse Rett have guaranteed charity places at runs all over the UK. You can check out if there's a run near you at the link below and if so please contact Mark Reilly at [email protected] to enter 🤩🙏

https://www.reverserett.org.uk/events/run-for-charity-events/