Reverse Rett Weekly Blog

We produce a weekly blog to share what we’ve been up to, information from the rare disease community and pieces from families living with Rett Syndrome.

We want to bring the UK Rett community stories of our activities, things we’ve found interesting, and updates from research as well as the real life thoughts and experiences of families living with Rett Syndrome.

We’ll be posting the blog every Friday. If you’d like to share your own story on our blog, please contact

Last week, at Reverse Rett, we were overloaded with preparations for our first Discovery Day and did not have time to write a weekly blog due to a last minute electrical glitch which meant that the venue for the event, the Livability national offices, were closed for the weekend.

We had a tough call to make re whether to cancel the Discovery Day at short notice, or find ways to adapt to the situation and move forward. Knowing that so many people were already on their way down to the event, most of them Rett families who had made military preparations to attend, we decided to find a workaround and hold the event anyway. We are Rett families ourselves. When things change, we adapt and move on!

Despite the change in venue and subsequent disruptions which inevitably followed, we had nothing but positive feedback from the attendees. Special thanks to our brilliant speakers and contributors; Dr Stuart Cobb, Professor Santosh, Dr Jocelyn LeBlanc, Melise Davidson, John Sharpe, Kate Kensington, Darren Onyett, Hazel Beiny, Rachael Stevenson and Beth Johnsson and all the families and supporters who came along to learn more about Rett research and the most recent clinical findings which can positively impact how we care for the children and adults with Rett Syndrome who we love.

The day before the Discovery Day, we also had our annual independent audit at the Reverse Rett office in Manchester. For those who are not aware, all UK charities who raise over £500,000 per year are obliged to undergo an independent audit every year.

This is when a specially qualified accountant from outside the organisation, reviews the organisation’s accounts and all supporting paperwork for every item of income and expenditure for the charity’s accounting period. At Reverse Rett, our financial year runs from January 1st-December 31st and under review, was all documentation from the 2018 financial year.

Our auditors at Reverse Rett are a company called Slade Cooper, who specialise in charity accountancy. They are very thorough, as all good auditors should be and on the day of the audit, are able to request any piece of paper relating to any transaction for the accounting period in question.

Once the audit is complete, we write our Annual Report and our Chairman, Executive Director and the Auditor sign off so that the accounts and Annual Report for 2018 can be sent to the Charity Commission. Each year we publish our accounts and Annual Report on our website. You can read previous year’s Reverse Rett accounts and Annual Reports here. You can also search for any UK charity’s accounts and Annual Reports on the Charity Commission website here.

Earlier in the week, Rachael Stevenson and John Sharpe met with Becky Jenner and Hilary Truss of Rett UK in London for our quarterly UK Rett Disorders Alliance (RDA) meeting. The main focus of this meeting was to complete final edits on the Rett Syndrome Health Checklist which is currently being developed by the UK Rett Disorders Working Group which the RDA has brought together. Without funding for any over-arching administrative support for the clinicians, Rachael and Becky volunteered to edit the Checklist between them and have been working collaboratively on this over the last few months.

The Rett Syndrome Health Checklist will be published on line on June 25th 2019 and publicly launched the same day at the ‘Managing Complex Neurological Disorders in the Community’ Conference in Birmingham. Please find more information and tickets for the event here.

We very much look forward to being able to share this important, collaborative piece of work with families of people with Rett Syndrome and the professionals supporting them and extend our appreciation to our colleagues at Rett UK, FoxG1 UK and the wider UK Rett Disorders Working Group for all their hard work and contributions to the document.

With our first Discovery Day out of the way, our attention now shifts to our next event, looming on the upcoming Bank Holiday weekend. On May 25th, a group of 18 of us will walk 25K from Richmond to Sutton to honour children and adults with Rett Syndrome who we have lost since Reverse Rett was launched in 2010. It’s not too late to join us! You can enter the event here. Hopefully see you there!