Count me in: We need your Help during Rett Syndrome Awareness Month


October is Rett Syndrome Awareness Month and we need your help.

Can we count you in? 

We’ve been working to identify the actual number of individuals with Rett Syndrome living in the UK through freedom of information requests to local authorities and other statutory bodies. 

We also need to get as many of those individuals as possible signed up to the Rett Registry UK to help us demonstrate the urgent need for treatments and a cure for Rett Syndrome and so that we can contact those people when the time comes. 

But due to antiquated systems and the lack of accurate data collection across UK government bodies, this is proving difficult. 

You can help 

  1. Do you know other families of children or adults with Rett Syndrome in your school, town, village or local authority? If so, please email us and tell us how many and whether they are under or over 18. 
  1. Can you share a Rett Registry UK leaflet with them directly? If so, we can send leaflets out to you, email us here or call. 
  1. Could you ask your physio, OT, Speech Therapist, teacher, paediatrician, neurologist or any other specialist to share information about the Rett Registry UK directly with any other families or caregivers of individuals with Rett Syndrome that they know. If so, we can send leaflets out to you, email us [email protected] or give us a call.
  2. Get a story in your local paper emphasising the tremendous potential for treatment and the need to register missing patients.
  3. Put a post out on your local SEND or other community Facebook group asking other families and caregivers to register.

Louise Wainwright, mum to 13 year old Georgia lives in Leicestershire and said, “When I stopped to think about it, I realised I knew quite a lot of families with children or adults with Rett in my local area.

I hadn’t realised before, quite how important it is for Reverse Rett to have an accurate number so that they can demonstrate the need for new treatments to come to the UK.  Now I know, I want to share the information about the Rett Registry UK as widely as I can in my own community.” 

Can we count on you? 

If you can’t help us count and register other UK individuals with Rett, can you support us by fundraising? At Reverse Rett, we have to do a lot of fundraising to keep doing the work we do.  

We are the only UK charity funding the Rett Registry UK 

– a vital part of delivering UK clinical trials of new treatments and demonstrating need within the UK Rett community 

We are the only UK charity funding the CIPP Rett Centre based at King’s College Hospital-the only UK Rett clinic caring for Rett patients year round, with on average 6-7 patients a week. This centre is open and available to patients with Rett of all ages from anywhere in the UK. 

We are the only UK charity who have funded Rett Syndrome research since 2007 with over £7 million delivered over the last 13 years. 

At Reverse Rett, our focus is on bringing life changing treatments for Rett Syndrome into the homes and lives of everyone affected in the UK. 

But we need your help to continue our work. 

Every fundraiser, from those climbing Kilimanjaro to those holding a bake sale, from the lemonade stand to rowing the Atlantic, EVERY ONE OF YOU COUNTS.  

Every one of you is moving us forward to a time when Rett Syndrome will not be the life sentence it is today. 

Please help us this October Rett Syndrome Awareness Month in whatever way you can. 

Don’t overthink it.  

Here are some of our most simple fundraising ideas 

Sponsored walk: gather friends, pitch up at a park, take a picture, post about it and add the link to the donate page on our website 

Come Dine with Me for Reverse Rett: Can you cook a good meal? If so, why not hold a gathering for your friends. Charge for entry or do it TV style and ask them to donate the amount after based on their experience.  

Sponsored soak: This doesn’t sound too bad after the weather we’ve had this last week but there’s nothing like a cold plunge whether it’s a bucket over the head or some other form of cold exposure. Set a minimum amount, get the donations in first and then deliver. Don’t forget to add that donate button to the video evidence to encourage more donations on the spot. 

Dress Down Day at work or school: Come to work or school in your own clothes and ask everyone to donate anything they like but a minimum of £1. 

At Reverse Rett, we are always fundraising, we have to, to keep everything we are doing on track. We are so grateful for your ongoing help to continue our work.