By Rachael Stevenson, CEO Reverse Rett
Over the last couple of years, the Board of Reverse Rett determined that we needed to develop a long term strategy to better articulate the direction of the organisation as we move into a time when transformative treatments start to emerge for people with Rett Syndrome.
When we talk about transformative treatments for Rett Syndrome, what we are really talking about is a cure. People and organisations do not like to use the word ‘cure’ because it brings to mind a complete recovery from disease which we still do not know is possible in Rett Syndrome.
‘Transformative treatments’ seems like a better (safer) description because it is referring to treatment which, while it may not completely recover someone from disease, there is the potential for it to significantly change their lives.
But as an organisation, we still needed to plan towards what we will need to do, once that long awaited ‘cure’ starts to emerge. To do this, we had to think about a lot of things; what research will we still need to fund if there’s a ‘one and done’ treatment like gene therapy. How the cure or treatment might look different for different people with Rett Syndrome of different ages. Whether treatment will be funded for both children and adults and what we can do to help as many people as possible access treatment.
We had to look at the kind of medical and therapeutic support that each of those groups might need as and when they have access to treatment. Crucially, we had to look at how we can ensure that as many people, children and adults with Rett, have access to emerging treatments as possible.
To do this, we also had to have a long hard look at who is missing from the Rett Registry UK and work out how we can find them and make sure they are counted and reachable when the time comes.
The result of all this work is our new five year strategy; ‘Change is Within Reach.’ You can take a look and also download the document below.
It tells you what is important to us at Reverse Rett, and how we plan to meet the lofty aims described within. It starts with our vision which is spelled out below. We hope you will read it and let us know your thoughts by emailing firstname.lastname@example.org or message us on any of the socials @reverserett.
With all best wishes,