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06/10/2019

Discover more: Changing the game for people living with Rett Syndrome today

Prof Sir Adrian Bird alongside Rachael Stevenson

The 2nd Reverse Rett Discovery Day was held at the Apex Grassmarket Hotel Edinburgh on September 15th 2019.

The purpose of Reverse Rett Discovery Days is to update families and supporters about the latest Rett Syndrome laboratory research, vital clinical research work going on here in the UK and this work can inform how to better manage the health of children and adults living with Rett Syndrome today.

We were delighted to welcome Sir Professor Adrian Bird and Dr Stuart Cobb from the University of Edinburgh and Professor Paramala Santosh of King’s College London, who has been leading the first UK clinical trial for Rett Syndrome at King’s College Hospital in London since 2017.

Stuart Cobb explains his latest work during his presentation

All three of our speakers gave a fascinating insight into the work they are involved in and the progress being made for patients with Rett Syndrome worldwide.

Rachael Stevenson, Reverse Rett Executive Director provided a presentation re the recently released Rett Disorders Alliance Health Checklist and highlighted some of the most important safety issues to look out for.

There were also two workshops to finish the day. Hazel Beiny held a forum for grandparents and a Clinical Trial Panel comprised of parents Melise Davidson and Beth Johnsson as well as Reverse Rett Clinical Trial Lead, Andy Stevenson each provided insight into their experiences with the trial.

With over 60 attendees from all over the UK and further afield, including one Dad who had traveled 7 hours by motorbike to be with us, there was a full house of families keen to learn more, including parents of both children and adults with Rett Syndrome and children with MECP2 Duplication Syndrome.

We owe huge thanks to our speakers, as well as owners and staff at the Apex Grassmarket Hotel and all the families in attendance for helping to make the event so rewarding and motivating. It was especially touching that we had members of both the Bird and the Cobb lab volunteering with us for the day.

A special mention goes also to our host, Reverse Rett Regional Ambassador, Tommy Lawson who made the day run as smoothly as possible. Thanks also to Darren and Julia from Let’s Do Pictures for filming throughout the day and effectively capturing the essence of the event in this short film.

Emilia with her dad, Al

We will be hosting two more Discovery Days in 2020 in Oxfordshire and Cheshire. We will have full details soon but in the meantime please sign up to our newsletter at the bottom of the page to keep up to date.