The Rett Syndrome Association of Ireland

Imagine the symptoms of Autism, Epilepsy, Parkinson’s,
Cerebral Palsy and Anxiety ... in one little girl

 

The Rett Syndrome Association of Ireland is an association of parents and families of people affected with Rett Syndrome and other related disorders.

 

What is Rett Syndrome?

Rett Syndrome is a rare neurodevelopmental disorder seen in infancy that occurs almost exclusively in females. It was first described by the Austrian pediatrician Andreas Rett 50 years ago but only in 1999 was identified the cause in a random mutation of a gene, called MECP2, on the X Chromosome and as of now there is no cure.

The disease has a cynical and aggressive attitude because the early developmental appear normal, but between 6-18 months of age, there is a delay or regression in development, that progressively cause physical and intellectual disabilities particularly affecting speech, hand skills and gait.

Girls become unable to walk, talk or use their hands resulting in total dependency for all of their needs 24/7 for all of their lives. Many individuals with Rett syndrome live long into adulthood but they develop Epileptic seizures, low tone, irregularity in heart rate and breathing problems.

Our Mission

We provide support and information to each other and to families who have received a new diagnosis

 

We aim to raise awareness among medical and other professionals who work with people affected by Rett Syndrome and other related disorders, as well as public awareness of the conditions, and to encourage and assist Research.

Media

Dr Ciara Kelly from Newstalk

Dr Daniela Tropea (Rett Genetics) and Laragh’s mum Carina Conyngham (Rett Parent) were speaking to Dr Ciara Kelly on Newstalk’s Alive & Kicking show on Sunday morning (29th October).

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Ireland AM - Rett Syndrome Awareness

Andrew Kehoe (father of Sarah who has rett syndrome)  and Lynnmarie with her daughter Jessica promoting rett awareness on Ireland AM on the 20th October

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Kfm Interview

Lynnmarie mother of Jessica was at Kfm on Thursday 12th of October raising awareness of rett syndrome and promoting text Rett to raise money for Rett Syndrome Ireland.

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Family Weekend 2017

Rett syndrome Ireland hosted their annual family weekend on the 6th – 8th of October for families of children with Rett Syndrome at the Sheraton Hotel in Athlone.

 

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Slane Castle

Slane castle was  lit up for the month of

October for rett awareness month.