LUCY FEST 2025

Please read and share!

Lucy is Katherine and Dan’s daughter and she has a condition called Rett Syndrome. Rett syndrome is caused by a deleted gene on the X chromosome, specifically the MECP2 gene. Rett syndrome mostly affects girls and is classed as a rare condition, as it affects 1 in 10,000. Lucy, and other girls with Rett syndrome, cannot do most things in life. Lucy can’t walk, talk, or use her hands. She needs a 24/7 car to be looked after.

But in 2007, it was discovered that Rett syndrome could be cured by gene replacement therapy, and it was proven in lab mice. The MECP2 was replaced and “reversed” Rett syndrome. This brings us to the present day. The drug is in the human trial stage, and it's going very well. Girls can say meaningful phrases, regain the use of their hands, and hopefully even more as the dose gets stronger and the protein levels are put to the correct dose.

We are so close to a cure it’s scary. So, so close.

This is why Lucy Fest is happening. We want to raise as much money for Reverse Rett as we can to get the drug available to girls and women across the world.

Lucy Fest is a celebration of life and music, come along to an amazing night of ska and pop-punk on 2nd August at The Wedgewood Rooms.

This page was created for the amazing people that would like to donate to our cause but are unable to attend the gig. We thank you all for your donations.

The UK Rett Syndrome community is at a pivotal moment at the moment with two clinical trials of gene therapies underway.

Much is required of our small, rare disease organisation at this time. At Reverse Rett, we are packing a mighty punch in accelerating disease-modifying treatments for Rett syndrome but we need your support to keep our work going.