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What we do

Reverse Rett exists to bring treatments and a cure closer. We fund research and forge connections between scientists, doctors and those affected by Rett to make this goal a reality.

In 2007, with the successful reversal of Rett in the lab, we entered a new era for research in which we knew a cure was possible. We are now entering a final era, in which trials are beginning and we are building the clinical capacity to deliver effective treatments.

Below, you can see a timeline of key milestones that show progress in the field since the reversal experiments of 2007 and in the work of Reverse Rett which was launched in 2010.

Key Milestones
February 2007

Adrian Bird shows Rett can be reversed in mice, a huge moment that paves the way for Rett gene therapy research in humans.

July 2010

Reverse Rett is founded by five parents from the home of now CEO, Rachael Stevenson.

July 2011

Launch of RSRT’s international MECP2 Consortium to combine global efforts to find a tangible way to reverse Rett in humans.

January 2013

RSRT launch international Gene Therapy Consortium to compound efforts to drive Gene Therapy for Rett into human trials.

August 2013

Gene therapy shown to reverse the symptoms of Rett Syndrome in mice.

September 2013

Reverse Rett start UK Rett Syndrome Patient Registry in anticipation of human clinical trials of potential new drug treatments.

September 2014

Reverse Rett begin seed-funding a pioneering team at King’s College London, working to develop new outcome measures for patients with Rett Syndrome under Professor Paramala Santosh.

March 2017

UK’s first clinical trial of a potential drug treatment for one of the symptoms of Rett Syndrome begins under the leadership of Professor Paramala Santosh at King’s College London.

June 2017

RSRT/AveXis announcement of development of first human clinical trial for gene therapy in patients with Rett Syndrome.

June 2019

2nd UK clinical trial for a potential treatment (cannabidiol) launched at three UK trial sites

Research we fund

We’re working to bring about better days for children and adults living with Rett Syndrome today by funding international laboratory research focused on addressing the underlying cause of the disease and UK clinical research, which will enable children and adults with Rett to lead longer, healthier lives until treatments and a cure become available.

How we fund that research

We use a rigorous application process, called peer review, to help us decide which UK clinical research to fund.

Our policies and documents

People with Rett Syndrome are at the heart of everything we do. Through research, we aim to make a positive impact on their lives.  Reverse Rett is a full member of the Association of Medical Research Charities (AMRC) and are the leading funder of Rett Syndrome research in the UK.

I was first introduced to Rett Syndrome when I received an out of the blue phone call from Adrian Bird, who first discovered MeCP2 protein, requesting some help with a set of specific experiments. Following this successful collaboration, Rett Syndrome research has become a primary focus of my lab. While traditional drug approaches will likely be restricted to correcting specific aspects of what goes wrong in Rett, it is conceivable that Gene Therapy can correct the cause of Rett at it’s very source and thus provide a profound recovery of function.

Dr Stuart Cobb, Simons Fellow and Reader in Neuroscience, University of Edinburgh

Latest news

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    Belfast LIVE: Co Down mum on rare genetic disorder that stops daughter walking and talking

    When Tara and Glenn Baine started to noticed their baby girl wasn’t reaching her
  • AveXis Gene Therapy Update

    AveXis Gene Therapy Update

    Released by RSRT on August 22nd 2019 Our community has been anxiously awaiting news

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