About us

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 priorities

  • Funding research into basic science, clinical treatments and clinical trials.
  • To facilitate the development of clinical treatment centers in the UK which would also be capable of running clinical trials.
  • To develop Reverse Rett’s organizational capabilities so it can fulfill its Mission and Vision in the longer term.

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.

Since day one, we have worked in partnership with the US based 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 team is now based at a small office in the Old Parsonage in Manchester.

Our people

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

Our partnership with RSRT

We work in partnership with the US based Rett Syndrome Research Trust. Although we no longer share the same name, we share the same aims and goals and work together to fund high quality, strategically selected research projects. 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.