About us

About us

Reverse Rett is a UK medical research charity working to speed treatments and a cure for Rett Syndrome.

Rett Syndrome has already been reversed in the lab. We work to drive these promising lab developments into tangible treatments and a cure for people living with Rett Syndrome today.

Reverse Rett is the only UK charity currently funding research focused on treatments and a cure for Rett Syndrome.

Our Purpose

Reverse Rett exists to accelerate treatments and a cure for Rett Syndrome.

We fund international Rett Syndrome research through our longstanding partnership with the US based, Rett Syndrome Research Trust (RSRT) who are responsible for peer review and monitoring of those projects.

Our UK work has a translational impact with clear patient benefits. We work to ensure that as treatments and a cure for Rett Syndrome become viable, they are accessible to patients in the UK. We do this by funding some UK clinical work, supporting treatment-focused UK clinicians and supporting UK clinical trials.

Our vision

Our vision is a world where girls with Rett Syndrome are diagnosed much quicker and earlier than they are at the moment. A world where we know much more about the progression of the condition and the factors that affect that progression.  A world where at every stage of development, treatments are available to mitigate against the distressing symptoms which can occur, and ultimately a world where treatments are available which cure the condition and allow the girls to live normal lives.

Our mission

Our mission is to speed treatments and cures for Rett Syndrome and related MECP2 disorders by funding research that will have a practical and positive effect on our children’s lives.

We fund research from basic science to clinical trials, and work to facilitate the translation of this work to clinical applications for people with Rett Syndrome and related MECP2 disorders

Our history

Reverse Rett, formerly Rett Syndrome Research Trust UK, was founded by five parents who joined together in late 2009, to do what they could to impact international efforts to speed treatment for Rett Syndrome from the UK.

These parents were Rachael Bloom (now Stevenson), Monica Coenraads, Kori Dryhurst-Coates, Rita Ross and Andy Stevenson. In the early days, the organisation was run from a single laptop in the home of our now Executive Director, Rachael Stevenson and has since delivered over $5 million to Rett Syndrome research worldwide.

Since day one, we have worked in partnership with the US based Rett Syndrome Research Trust (RSRT) and other international organisations to compound a global effort to speed treatment for Rett Syndrome. We have won two Best New Charity Awards; in the Charity Times Awards 2011 and the Just Giving Awards 2012 respectively. Our small but national team is now based in Manchester.

Our partnership with RSRT

Reverse Rett and RSRT share the same aims and goals and work together to fund high quality, strategically selected research projects worldwide. Both organisations are autonomous with independent Trustees and financial co-ordination. Rett Syndrome Research Trust Executive Director, Monica Coenraads serves on the Board of Trustees of Reverse Rett and Reverse Rett Executive Director, Rachael Stevenson serves on the Board of Trustees of the US based RSRT.

Our people

So many people make our work possible; staff, volunteers, our Board of Trustees and our Professional Advisory Board. Meet our people here