This is an ongoing campaign to raise the money that will allow Reverse Rett to continue funding the CIPP Rett Centre, a specialist treatment and research centre for people with Rett Syndrome.

For the past 4 years, the CIPP Rett Centre has been a lifeline for families throughout the UK. The Centre cares for children, young people and adults of all ages who have Rett Syndrome, a debilitating neurological condition which leaves those affected unable to speak, move freely and or use their hands.

Rett Syndrome also causes many physical symptoms which cause pain and distress including anxiety, agitation, sleep issues, breathing irregularities and other autonomic dysfunction.

Rett Syndrome also impacts a person’s cardiac function and patients with Rett Syndrome of all ages are at risk of sudden death.

Research has shown that with adequate health care, people with Rett Syndrome can live into their fifties.

Sadly, the reality is that many UK children, young people and adults with Rett do not have access to doctors who understand the condition or who have experience in managing the complex health of people with Rett Syndrome.

With 100% funding from Reverse Rett, the CIPP Rett Centre based at the South London and Maudsley/King’s College Hospital in London is monitoring more than 150 complex UK patients with Rett Syndrome.

Patients are monitored digitally with the use of the Reverse Rett funded REST (HealthTracker) questionnaire which is a user friendly online questionnaire which was developed in partnership with Reverse Rett and our family focus groups.

The Centre also tracks the symptoms of new patients and those struggling with acute symptoms with wearable technology funded by Reverse Rett as well as running clinical trials.

Reverse Rett core funding for the CIPP RETT Centre for just ONE YEAR is £338,000.

This funding is what enables children, young people and adults with Rett Syndrome who have a clinical need, to be cared for by the Centre at no cost to them, without delay.

At Reverse Rett we are committed to continuing to support this vital work but we need your help.

100% of the money raised through this campaign page will be ringfenced for the CIPP Rett Centre, every single penny will go to keeping this vital resource open.

There are three ways you can help.

1, Set up a Just Giving page specifically for the centre and take on a challenge or hold an event. Let everyone know that 100% of their donation plus gift aid will go to the CIPP Rett Centre.

Fundraising for the first time can be daunting but we are here to help you and will help you with every aspect to ensure that you can maximise your donations.

Please contact Andy Stevenson at andy@reverserett.org.uk

2, Make a donation through this campaign page. That will ensure that 100% of your donation plus gift aid will go towards funding the centre.

3, We know that we are living in difficult times and not everyone has the time to train and take on a challenge or make a donation so you can help us by sharing across your personal network. Email friends who may be in a position to help, ask your employer if they support charities and make your case for Reverse Rett.

4, Donating your birthday on Facebook/Instagram is a simple but extremely effective way to raise money.

Share our posts on your social media pages. Sometimes support comes from the unlikeliest of places so let everyone know how important Reverse Rett and the CIPP Rett Centre are to you.

Thank you for helping us keep this vital work going!