Reverse Rett

Join the Reverse Rett Family at the Edinburgh Kiltwalk 💜

On Sunday 13th September, our Community Fundraising & Advocacy Manager, Mark Reilly, and his family will be taking on the Edinburgh Kiltwalk – Wee Wander (4.5 miles), and we'd love for you to join us!

This walk is especially meaningful to Mark and his family as they celebrate his daughter Dionne's 18th birthday just a few days earlier. What better way to mark such a special milestone than by bringing our incredible Reverse Rett community together.

Whether you walk with your child, push a wheelchair, or bring along siblings, grandparents or friends, everyone is welcome. Together, we can create a sea of Reverse Rett t-shirts, smiles and determination as we cross the finish line.

"Together, let's make Dionne's 18th birthday celebration one to remember and create a very special day for the entire Reverse Rett family."

Mark Reilly, Dionne's dad 💜

If you've been thinking about taking part in a fundraising event, this is the perfect opportunity. We'd love to see as many Reverse Rett families as possible walking together.

It's going to be a fantastic day, we already have over 30 walkers signed up so if you'd like to join us then you can enter at the link below 🥰

https://www.thekiltwalk.co.uk/events/edinburgh

If you have any questions or would like more information then please get in touch with Mark at [email protected] 🙏

Hats off to Reverse Rett Warrior, Stewart Morris who completed his 5th or is 6th challenge this year 💪😁

the South West 50k was only a short one by Stewart's standards and it was truly beautiful to see his inspiration, daughter Penny at the end 😍

Stewart has more challenges ahead this year and is already looking forward to his 2027 schedule. Two Marathons have already been entered and there are both 50 and 100k treks on his agenda 🦵

If you would like to join Stewart and the Reverse Rett team either this year or next then please contact Mark Reilly at [email protected] who will talk you through all the different events and options 😄

Great work, Stewart, you are a real inspiration to us all 💜

A huge shout out to Vivian Wraae 😍

Vivian decided to support Reverse Rett after her friend's grandson, Cameron, was diagnosed with Rett syndrome late last year and Vivian has wasted no time in taking on the epic challenge of running 10 x 10ks in his honour 💪

Thank you, Vivian for your incredible kindness and support 💜

https://www.justgiving.com/page/vivian-wraae-4

In April, Hannah and Will travelled from Mexico to Manchester to run the Manchester Marathon 😍

They were part of the 50 strong Reverse Rett team and were running for their niece, Poppy 💜

They loved everything about it and you can read their story in their own words at the link below 👇

https://www.reverserett.org.uk/from-mexico-to-manchester-and-back-again/

Next year, we already have teams in the Manchester and Edinburgh Marathons in April and May. Some of our runners are doing both 😳💪🦵

If you or anyone you know are interested in joining us then please contact Mark Reilly at [email protected] to enter or to find out more.

Whether you're an experienced runner or a complete novice we'd love to have you on our team 😍 💜

The countdown is on for the Reverse Rett Scottish Gala! 😍

We're looking forward to welcoming friends, families and supporters to the beautiful Apex Hydro Hotel, Dunblane on Saturday 24th October 2026 for an unforgettable evening.

Enjoy a sparkling Prosecco reception, a delicious three-course meal, inspirational speakers, fantastic live entertainment, dancing, our online auction and the much-loved Heads & Tails – all while helping to accelerate treatments for Rett syndrome.

Tickets are selling fast so don't miss your chance to join us for what promises to be a truly special night.

You can get your tickets at the link below 👇

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

Can you help make the evening even more successful?
We're looking for:

Raffle and auction prizes to help us maximise the funds we raise on the night.

If you or your business can donate a prize or support the event in any way, we'd love to hear from you.

We'd also love to grow our Scottish Gala Committee. If you'd like to play a part in planning this fantastic event, meet new people, and make a real difference for families affected by Rett syndrome, please get in touch with Catherine Sim at [email protected]

Whether you can give a little time or a lot, we'd love to welcome you 🤩

Every ticket sold, every raffle prize donated, every volunteer and every contribution allows us to continue advocating for and supporting families and to accelerate access to emerging treatments for Rett syndrome in the UK.

Please share this post and help us make our best Gala yet 💜

Please watch this video from last year's Gala at the Reverse Rett YouTube channel.... This is why we do what we do 💜

https://www.youtube.com/watch?v=JuQ3oSMjvxc&t=220s

Our first video from LEAP 2026 is now available on the Reverse Rett YouTube channel 😍

Breathing problems are very common in Rett syndrome. In fact, research shows that every person with Rett experiences disruptions to respiratory function over their life time.

Respiratory issues can also be worsened by low muscle tone (hypotonia), trouble swallowing and gastroesophageal reflux (GERD), scoliosis (curved spine); and sleep-related breathing issues, like central or obstructive sleep apnea, which affect up to 70% of people with Rett.

We want to bring you the best advice for how to manage your loved one's respiratory issues. So we've asked an expert.

Sian Midwinter is a specialist respiratory and learning disability physiotherapist, and the founder of Midwinter Physiotherapy Ltd.

In this presentation, recorded at the Reverse Rett LEAP Weekend 2026 and now available at the Reverse Rett YouTube channel, Sian marries scientific research into lung health, with over a decade of experience giving therapy to Clare, to give you the best advice for improving your loved one's lung health.

Thank you to Sian and to Clare, who has inspired Sian’s commitment to helping our community 💜

Don't forget to like and subscribe to the Reverse Rett YouTube channel to enable you to access our content as it's released 🙏

https://youtu.be/XZTyF_nfwHc?si=xN6Ao43SNg-DsC73

Hope. Progress. Partnership 💜

LEAP Weekend 2026 brought together families, researchers and clinicians for a truly inspiring weekend of learning, collaboration and hope.

We're delighted to share a blog by Faye Bolan, Senior Analyst at Costello Medical, reflecting on the key takeaways from the weekend and why they matter for the Rett syndrome community.

A huge thank you to Faye and everyone at Costello Medical for your continued partnership and support. Your expertise, including your work on the UK Rett Syndrome Cost of Illness Model, is helping build the evidence needed to improve the lives of people living with Rett syndrome and support access to future treatments.

We hope you enjoy Faye's reflections and find them as inspiring as we did 😍💜

https://www.reverserett.org.uk/key-takeaways-from-leap-weekend-2026-hope-progress-and-living-well-today/

“I find supporting Reverse Rett through the 365 Club is an easy and convenient way of continuing to support the Rett community.

My beautiful granddaughter Edith was diagnosed 3 years ago, just before her 2nd birthday, and I will do anything to support the research which we all hope one day will improve the lives of our loved ones with Rett Syndrome”

Eunice Moody, 1st Prize Winner in the June 365 Club Draw 💜

The next 365 Club draw will take place on Thursday. You can sign up for just £5 a month at the link below 💜

https://365.reverserett.org.uk/

For six years, thanks to the incredible generosity of our supporters, Reverse Rett was proud to fund the CIPP Rett Centre.

Together, we helped establish specialist multidisciplinary care for hundreds of families, supported groundbreaking research and clinical trials, and demonstrated what dedicated Rett syndrome services can achieve. We are immensely proud of everything that was accomplished.

As families begin receiving notification that the Centre is closing, we've published an article explaining why our funding came to an end, what was achieved over the past six years, and our ongoing commitment to improving care and accelerating research for everyone living with Rett syndrome.

Our mission has not changed. We remain committed to supporting families, advancing research, improving access to future treatments, and advocating for better specialist care across the UK.

If your child has recently been discharged from the CIPP Rett Centre, the article also explains what to do next.

If you have any questions or are having issues after discharge then please reach out to us directly at [email protected]

Read the full article here 🙏

https://www.reverserett.org.uk/reverse-rett-the-cipp-rett-centre-and-looking-to-the-future/