This is an urgent appeal for funding to keep the CIPP Rett Centre, a specialist treatment and research centre for people with Rett Syndrome going.

The CIPP Rett Centre manages the complex care of patients OF ALL AGES and conducts research including clinical trials.

There are no approved treatments for Rett Syndrome BUT if carefully managed, children with Rett Syndrome can live into adulthood and beyond.

The CIPP Rett Centre is currently 100% funded by Reverse Rett and receives no NHS funding.

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.

This is not the case for patients who attend or are monitored by Professor Santosh and his team at CIPP. Currently the team at CIPP, which is based at King’s College Hospital in London are monitoring more than 150 complex UK patients with Rett Syndrome.

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

But just one year of funding for the CIPP Rett Centre costs £338,000.

100% of any donation or fundraising page made through this campaign will go directly to the CIPP Rett Centre.

DONATE HERE

Professor Santosh and his team at the CIPP Rett Centre made a plan personalised to Lauren’s complexities. This has already proved invaluable for someone with the combination and volume of different medicines that she takes.

The team were also brilliant throughout lockdown, checking in regularly to see how Lauren was and tweaking her medications if necessary. They are also on hand to answer questions and support us. The CIPP Rett Centre has really made a huge difference to our lives.

Helen, Mum to Lauren

There are four ways you can help:

1. SET UP YOUR OWN JUST GIVING PAGE

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.

www.justgiving.com/reverserett

2. DONATE TO THIS CAMPAIGN

That will ensure that 100% of your donation plus gift aid will go towards funding the centre.

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.

3. SHARE WHAT YOU ARE DOING

Email friends who may be in a position to help, ask your employer if they support charities and make your case for Reverse Rett.

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.

4. DONATE YOUR BIRTHDAY

Donating your birthday on Facebook/Instagram is a simple but extremely effective way to raise money. CLICK HERE to find out how.

The focus of the CIPP Rett Centre is to be a beacon of care and support for patients with Rett Syndrome all across the UK.

We strive for clinical excellence; by harnessing a translational approach, we will continue to impact the lives not only of the individual patients and families we care for but also, of the wider Rett community.

We are very grateful to Reverse Rett and all their supporters for making this work possible.

– Professor Paramala Santosh