My own personal fight with Rett syndrome has been going on for 21 years now and it finally feels like the tide against this horrible disease is turning.

Gene Therapy for Rett syndrome is now happening and it's happening here in the UK! The initial data released for both children and adults who have taken part in Canada and the US is life changing and has got me dreaming of what the future could look like for Amber, Beth and all the people living with Rett, regardless of age, around the world.

The work of Reverse Rett has never been more important. We no longer just send money to scientists looking for a cure in a lab and cross our fingers.

We need to find and register as many of our UK patients with Rett syndrome on the Rett Registry UK.

We need to continue working alongside the pharmaceutical companies involved in clinical trials in the UK to drive the development and be the patient voice.

We need to build tools and resources to support the campaign for UK regulators and payers to recommend funding for these treatments when they are proven to work.

We need to help develop the clinical network of doctors and trial sites which will deliver treatments once they are demonstrated to be safe and effective through clinical trials.

We need to continue funding the CIPP Rett Centre which currently costs £338,000 a year and is 100% funded by Reverse Rett. The team there will be vital in making the most of clinical outcomes in older and or more complex patients with Rett syndrome, post access to emerging disease modifying treatments and critical now, in helping patients stay healthy until these treatments become accessible to them.

We need to continue to share the latest information and resources about staying healthy with Rett syndrome to ensure that as many individuals with Rett as possible are able to benefit from disease modifying treatments in the future.

There is a lot to do and that's why I've already run the Manchester Marathon. I'm now following that up with the Jurassic Coast 100k in May and the Lake District 100k in June (They're only walking though).

As long as Amber and Beth have to live with the effects of Rett then I'm going to keep doing whatever I can to help, however much it hurts.

Progress has been made, much faster than I ever thought possible so please support me and Reverse Rett and be part of making Rett syndrome the first neurological disease to be CURED!