Rett Syndrome Awareness Month: Dunblane Hydro set to host event to raise cash for 'cruel' rare neurodevelopmental disorder

The event at Dunblane Hydro will raise money to help children like Poppy Neale, from Glasgow, who have the rare neurodevelopmental disorder Rett Syndrome. | Booking.com/contributed

This Saturday (October 24), families from all across the UK will come together in Scotland to raise awareness and much needed funds for a rare disorder.

October is Rett Syndrome Awareness Month, and it's more important than ever to support as great strides are being made in gene therapy research and trials and life-changing treatments for this rare disorder are closer to reality than ever before.

Rett Syndrome is a rare neurodevelopmental disorder affecting approximately one in 12,000 people worldwide. It is genetic but not hereditary, with children developing normally until 6-18 months of age when they hit a regression and symptoms start to appear.

Rett syndrome affects every aspect of life for those affected with it, including their ability to walk, talk, and devlop fine and gross motor skills and also comes with severe medical issues around swallowing, seizures, and scoliosis, among others.

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There is currently no treatment or cure, but gener therapy trials are well underway and showing life changing results in initial phases.

This marks the second year the annual fundraiser will be held in Scotland, having being held in London for 15 years prior.

Last year £77,000 was raised at an event in Glasgow to support research, advocacy and the continuing fight towards a cure and this year will see 256 guests pack out the Dunblane Hydro for the cause, including many of the children and families affected by the cruel disorder.

The event is sold out but if you would like to make a donation you can do so here.

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