DOUBLE Your donation in the Big Give Christmas Challenge

The Big Give Christmas Challenge will begin at Midday on Tuesday 2nd December and will end 7 days later at Midday on Tuesday 9th December.

This is a once in a year chance to DOUBLE any donation you make to Reverse Rett.

This year’s project, entitled “Empowering Families Through Advocacy and Support.” has been supported by John and Maureen Sharpe and the Reed Foundation.

The money pledged will be doubled up to our target of £87,500!

Through this project, we aim to reach more families with critical health information about Rett syndrome, through covering the costs of an Advocacy Support Worker, Rett Registry Co-ordinator and educational workshops. 

Research shows that with adequate health care, people with Rett syndrome can live into their fifties. However, through our recent Mortality Survey, Reverse Rett has shown that outcomes for UK patients have diminished since the Pandemic. With over 50 competing and conflicting symptoms and a lack of understanding in the medical community, it is essential that families have the information that they need in order to effectively advocate for their children to access appropriate and timely care.

Both an Advocacy Support Worker and the Rett Registry Coordinator will play a key role in ensuring that families are empowered with the information and resources needed to keep their child as healthy as possible for as long as possible.

This will be achieved by utilising the patient registry to identify ‘red flags,’ in a child’s health milestones and highlighting key actions, whilst providing the essential information and advocacy support the family needs to address any issues.

We will also be holding our third LEAP Weekend conference in Manchester in June 2026 which has proved so beneficial to families, giving them a chance to listen to clinicians running Rett clinics in the UK and US and also scientists and industry partners.

It is also a chance to spend time with other families living with Rett syndrome.

This will be our 16th Big Give Christmas Challenge and thanks to you, our families and supporters we have reached our target every year raising over £1.2M from this challenge alone.

Thank you for your support and we hope you can help us again from December 2nd AT THIS LINK