Florie's Fund to Fight Rett Syndrome

Florie's Fund to Fight Rett Syndrome Florie was diagnosed with Rett Syndrome on the 28th May 2012. After a normal birth and growing up int All the above was not apparent until 16 months and onwards.

Florie's lost her speech, functional use of her hands, her ability to chew, she has recently lost her mobility and her back has started to curve. She suffers with stomach pains and constipation, stiff joints, and more. They describe Rett Syndrome as Epilepsy, Parkinson's, Autism, cerebral palsy, and anxiety disorder all in one little girl. The reason we have set up this fund is because not everyth

ing is available on the NHS and although me and Adam will do as much as we can, you can imagine the list of things that will help is endless. Top of our list is a EyeGaze computer, they are over 10 grand. But this will allow Florie to play and communicate with her eyes, it's amazing, we have trialled one and are excited that soon enough with enough fundraising we can have one in our home. Other things we will purchase is furniture, sensory equipment and therapies that will make Florie's day to day life easier. Florie was born 26/08, She has 2 older Brothers and comes from Hertfordshire.

19/06/2026

Aww my heart, this feels like a life time ago!

18/06/2026

Can you see my posts? Please 👍🏻 or leave some ❤️ if you are seeing them!

https://youtu.be/oZg_f0z0eh4?si=kuHkRTsOmJG0RIYbWow forgot I made this video (its a long one) ... all our fundraising up...
14/06/2026

https://youtu.be/oZg_f0z0eh4?si=kuHkRTsOmJG0RIYb

Wow forgot I made this video (its a long one) ... all our fundraising up to 2015. We can add to that a few more very successful events!

Our Efforts in Fundraising since Florie's Diagnosis in 2012.

Tickets on Sale for our family disco.
14/06/2026

Tickets on Sale for our family disco.

What is Rett Syndrome? And how does it effect the people who have i...

Get your tickets now!
02/06/2026

Get your tickets now!

Florie’s Fund Family DayCelebrate the School Holidays 🎉Raising Awareness & Funds for Rett Syndrome💜Supporting Florie 💜A good old fashioned Disco with a few added extras Thank you for supporting our mission, your support is invaluable.

8 weeks to go…Get your tickets now and support Florie 🧡
25/05/2026

8 weeks to go…
Get your tickets now and support Florie 🧡

Florie’s Fund Family DayCelebrate the School Holidays 🎉Raising Awareness & Funds for Rett Syndrome💜Supporting Florie 💜A good old fashioned Disco with a few added extras Thank you for supporting our mission, your support is invaluable.

08/01/2026

You might’ve seen recent headlines about Jesy Nelson, former Little Mix star, bravely sharing that her tiny twin daughters have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic condition affecting muscle strength and movement.

This is a condition which, without treatment, is fatal around the age of two and Jesy is now pushing to get SMA added to newborn screening in the UK so other families can catch it early and get the treatment they need.

Here’s why this matters to us at Reverse Rett:

A few years ago, SMA was a place our Rett community knows all too well, little hope, no effective treatments, no standard newborn screening, and families left scrambling.

Today, thanks to relentless research and advocacy, game-changing therapies like Zolgensma and others are changing the outlook for many children with SMA helping them survive and reach milestones that once seemed impossible.

That kind of progress didn’t happen by accident.

It happened because people refused to accept “there’s nothing more we can do.”

And that’s exactly the mindset driving the fight against Rett syndrome.

Just like SMA, Rett once lived in a world of “there’s nothing we can do.”

But we’re now seeing gene therapies in active trials, more innovative science, and more momentum than ever and that momentum matters. Every advance in rare disease science sends ripples across the whole field.

So let’s:

Celebrate wins elsewhere in the rare disease world

Use them to fuel our vision for real breakthroughs in Rett syndrome.

Keep pushing until we’re writing about Rett just like we’re now writing about SMA 💪

Change is coming for our community đź’ś

Keep the hope burning 🔥

https://www.bbc.co.uk/news/articles/c1m7r840gl0o

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Sawbridgeworth

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