Thank you and Happy New Year!


As we come to the end of 2017, we’d like to thank all Reverse Rett supporters and fundraisers.

Through your efforts, there have been a number of highlights throughout the year. We’ve picked a few moments we’ll never forget to share with you and to inspire all of us, as we head into the unchartered territory of 2018.

In March 2017, with your support, Reverse Rett was able to facilitate the implementation of the first UK clinical trial for a potential treatment for Rett Syndrome, at King’s College Hospital in London.

We hope this trial will be the first of many good things to come for UK patients with Rett.

This short film shows the impact, not only of Rett, but also of hope, the ultimate difference you make to all of our lives.



In April, five people ran the London Marathon for Reverse Rett without the charity having a single designated place. Since even before Reverse Rett was formed in 2010,  no ‘new’ charities have been able to purchase charity places but that’s never stopped anyone running or fundraising. This year’s team of 5 raised over £12K for Rett Syndrome research.


In June 2017, Bio-tech company, AveXis, announced their commitment to advancing the Rett Gene Therapy Program initiated by RSRT into human clinical trials. For all of us who desperately need a cure for someone with Rett, nothing in research happens fast enough. 2017 made it ten years since Adrian Bird originally hypothetically demonstrated reversal in Rett mice. To now have a technique which is potentially viable in humans, which has been picked up and is being driven forward by industry, is swift progress indeed. May the momentum continue.

Also in June, just a few miles down the road from Edinburgh where Rett Syndrome was originally reversed in mice, 270 Scottish runners gathered to run the Reverse Rett North Berwick Change is Possible 5K at the magical Archerfield Walled Garden. We’re grateful to everyone who came, ran and conquered and especially to our friends at Archerfield who keep finding new ways to help Reverse Rett wherever they can.

In August, 22 year old Naomi Vides became the first person to ever swim the English Channel for Reverse Rett, making her way to France over a freezing 12 hours for the love of her younger sister, Nadya.

In October 488 people gathered virtually for International Rett Syndrome Awareness Month to take part in the 2017 Reverse Rett Change is Possible Virtual Run. Families and supporters in Brazil, South Africa, Spain, USA and Gibraltar joined us in raising both awareness of Rett and vital research funds at the same time.

Early November saw the 8th Annual Reverse Rett London take place at Church House, Westminster. Sponsored by our good friends at Hansal International, the Gala was a great success, raising over £94,000 for the research projects we support.

In late November, more donors than ever before came forward to support to the Reverse Rett Big Give Christmas Challenge, 168 people raising £95,000 in just under 24 hours to fund the ongoing work of RSRT’s Gene Therapy Consortium, now working in the wake of the AveXis announcement on improved techniques for second generation gene therapy programs for Rett.


As we move into the New Year, we do so with gratitude, hope and expectation from the year ahead. We live in a time of rapidly evolving technology and innovation as the first gene therapies and other sophisticated techniques are emerging to restore function which was previously lost in diseases which have historically been perceived as incurable.

Rett research has moved in great strides over the last decade. We have every right to be hopeful that our time will come.

None of it would be possible without your support. Throughout the year, people who want to make the ultimate difference for those living with Rett, up and down the UK, have been stepping out and stepping up to make a difference.

The impossible determination of families living with and looking after someone with Rett, day in, day out, still summoning the energy to raise research funds. The indomitable spirit of parents and family members living with unthinkable loss and carrying on. This will is the lifeblood of Reverse Rett and is what will ultimately bring about real change in the lives of the people we love.


Happy New Year!

Because of you, #ChangeisPossible

From all of us at Reverse Rett



For your calendar

3rd Annual North Berwick 5K, 9th June 2018

9th Annual Reverse Rett London Gala, 9th November 2018