Hi Everyone,

Firstly we just would like to say I huge thank you to everyone who voted for the Reverse MECP2 (supported by Reverse Rett) in the recent charity vote.

It is such a lovely feeling to know that the Regency community is also keen to get involved in raising money to fund a cure for our son, Charlie.

Research is ongoing across the globe, but the main lab is located in Houston, Texas lead by the most incredible scientist, Dr Huda Zoghbi, who actually discovered, and named the syndrome only back in 2005.

MECP2 Duplication Syndrome is incredibly rare with less than 10,000 people worldwide with the condition, so financial backing is key to continue to fund the research.

There is massive hope, and the developments have been huge  since Charlie was diagnosed 5 years ago.

We have found that the syndrome has been not only cured, but
reversed in mice. These findings have enabled the scientists to work on a treatment that will be administered via the spine to counteract the levels of the MECP2 gene.

These projects required constant funding, and now we are
getting closer to a clinical trial stage we need to push more than ever.

The work these scientists do is astounding, and they are so  passionate to cure our children.

I was lucky enough to travel to Houston in 2020 to have a
tour of the lab, and of course meet Dr Zoghbi - she told me she wouldn’t retire until she has got us to a cure!

I know as many of you as possible will back us in the
exciting projects and events that Spire have lined up to support this incredible charity and research.

You can read some more about our story and the research in
the links below -

https://www.macclesfield-live.co.uk/news/macclesfield-riders-raise-thousands-honour-14974364

https://www.dailymail.co.uk/health/article-6201001/Parents-spent-three-years-trying-baby-likely-outlive-one-year-old-son.html

https://reverserett.org/mecp2-duplication-syndrome/

https://www.reverserett.org.uk/mecp2-duplication-research-progress/

Fiona