Why we love the Big Give Christmas Challenge

By Andy Stevenson

We love the Big Give Christmas Challenge. Alongside the London Gala, it’s our biggest of the year and a whole lot of fun. It always feels like Christmas has come early as we watch more and more donations being doubled.

Our supporters seem to love it too though we never take their support for granted. 

Despite raising £1,071,717.72 through the challenge over the last 11 years, there are always nerves in the Reverse Rett office as the big day gets closer.

2021 was our 12th year of taking part and once again our supporters joined together and smashed our target by raising an incredible…… £87,302!

We first entered just a few months after we launched in 2010 with a £10,000 target. We had no idea how it would go and it seemed like an almost insurmountable number to reach. 

Our families stood up to be counted that year and showed that they wholeheartedly believed in what we were trying to do in funding Rett Syndrome research. 

At that time, clinical trials and take-home treatments were a pipe dream.  We focused on sending money to the scientists around the world who were working on something, anything that would help our children.

Fast forward 11 years and the Rett Syndrome research landscape has completely changed. 

Clinical trials in Rett Syndrome are well underway. These trials are looking at medicines that will treat symptoms and hoping for an overall improvement in the condition.

Gene therapy clinical trials are also on the horizon and are due to start in early 2022. More and more gene replacement therapy companies are developing Rett Syndrome programmes; this could be the beginning of the end for Rett Syndrome.

The UK has become a big draw to these companies, thanks to a few things. 

• The Rett Registry UK which makes the usual challenge of securing patients for clinical trials much easier.
• Reverse Rett clinical trials services which streamlines processes for retaining patients on trials.

And above all

• The amazing work of Professor Santosh and his team at the CIPP Rett Centre whose internationally renowned clinical provision has already provided a strong foundation for the first several trials of drug treatments to take place.

The Centre has made huge progress in the two years since they launched. Despite the Pandemic they have been able to monitor and help lots of families, running full assessments online and managing and monitoring with digital questionnaires. 

They have also published six papers in scientific journals since the funding period began and are learning and disseminating more and more information about Rett Syndrome and best practise for managing specific symptoms or groups of symptoms all the time.

This year’s Big Give campaign was once again be focused on the CIPP Rett Centre. Now more than ever, we need to ensure a solid UK foundation where emerging treatments can be trialled, and if successful, delivered to the wider UK Rett population, by a clinical team with proven experience and expertise to manage this task.

The Centre is currently core-funded by Reverse Rett to the tune of £328,000 a year so the money YOU raised will really help us to keep this vital work moving forward.

The Big Give Christmas Challenge will be back in 2022 and if you’d like a collection pot to save up your loose change ready to be DOUBLED then please contact [email protected]

Thank you to each and every one of you for believing in the work we are doing.