We need your help


Spring is always a busy time at Reverse Rett and especially for our Head of Finance, Rashida, who has been working on our annual external audit. This is a process which any UK charities raising over £500,000 a year must go through and so, Reverse Rett has had to have an external audit every year now since 2012.  

It is a very thorough process whereby the auditor, who is from another company not connected to Reverse Rett, has to check that all the Reverse Rett finances are managed well and accurately and that we are doing the work described in our charitable objects. During the process, the auditor can request any paperwork, even a receipt for a transaction of less that £1 and we have to be able to produce it! 

The audit is also a good time for the organisation to review where we are up to overall in our mission as well as thinking about how we are doing financially. Since 2020, as part of the audit, we have had to write a document explaining whether or not we consider Reverse Rett to be financially viable over the next 18 months and if so, why. 

It has always been difficult to be able to make projections at Reverse Rett income over the years. Historically, most of the organisation’s income has come from community fundraising which is variable because community is people, and people’s lives are variable.  

We don’t always know that people are going to do challenges or hold events, but generally speaking over the years, before the pandemic at least, we could know that approximately the same amount of people would do something and it would equate to around the same income at the same sort of time of year. 

In 2020, we knew community fundraising could not take place to the same degree. We cut funding to some of our research programs, furloughed staff and focused on online events. 

In 2021, with the year starting with a lockdown, things were not much different until around June. We focused heavily on the two fundraising events at the end of the year, even building a hybrid event for the Gala so as to ensure that whatever happened, we could bring in research funds to get us off to a good start in 2022.  

But here in June 2022, despite managing to get through a difficult 18 months of successive lockdowns, what we are finding is that community fundraising still hasn’t gone back to pre-pandemic levels and that not as many people are taking part in or holding events. 

The Rett community is in a critical time just now with gene therapy trials projected to begin in Canada this year, and drug trials in the UK already underway for which Reverse Rett is providing recruitment and logistical support. 

As an organisation, Reverse Rett are doing more than ever before. As well as continuing to fund laboratory research projects focused on refined approaches to addressing the underlying cause of Rett, we are also providing core funding for the UK’s only dedicated clinical research and treatment centre, the CIPP Rett Centre in London.  

We’re managing and running the Rett Registry UK, which is a vital instrument in advocating for and implementing UK clinical trials. We’ve now worked on four UK drug trials, recruiting patients and managing logistics for participating families. We’re currently doing this for five trial sites for the Anavex 2-73 trial. 

At the same time, we’re working to build the required resources to effectively advocate for statutory funding for these emerging treatments when they have been proven effective in trials. We’re working with pharmaceutical partners to help them gather the required data to support regulatory discussions and applications. 

We’re doing everything we can to bring all the pieces together to ensure that our loved ones with Rett can access treatments as soon as humanly possible but we need your help. 

Could you do something this summer to help us boost our income and get our fundraising back on track once and for all? Why not consider going Speechless for Rett or if you have a birthday coming up, donating your birthday to help us with fundraising? Or perhaps you know a company or an individual who would like to sponsor the upcoming Reverse Rett Winter Gala? If there is any way you can help us, we would be so grateful for your support and we thank you for your ongoing interest in our work.