Last year, FraXI was lucky enough to cross paths with Bríd Quinn (being lucky to cross paths is an understatement- she is quite speedy!). Bríd is the proud mum of Alannah and Saorla, who live with Fragile X Syndrome. We covered her story here. We strongly encourage you to read it, but if you want…
Last year, Michal and Eva Bednarik started Slovakia’s first ever Fragile X family organisation. Back then, the Bednariks knew no other families raising children with an FX diagnosis.Today, they have helped multiple families across Slovakia with their FXS journey and found their own purpose along the way. FraXI is grateful to Michal and Eva for…
Table of Contents: Diagnostic Process Fragile X Syndrome (FXS) is diagnosed through genetic testing. Testing of an individual with suspected FXS is usually done through taking a sample of blood which is sent to a laboratory to test which form of the FMR1 gene is present. It is also possible to diagnose using saliva or…
Helping a person with Fragile X Syndrome (FXS) is about recognising and promoting their strengths as well as putting support in place for areas of difficulties. There will be a range of inter-linked aspects which cross categories. Socio-educational interventions, for example, may teach skills for daily living, give tools for independence and promote inclusion in…
Behaviour can cover many aspects of Fragile X Syndrome (FXS). Some behaviours are charming and idiosyncratic, others can disrupt daily life. Some behaviours may be linked to co-occurring conditions such as autism, ADHD, anxiety and depression. Often there is a combination of the above, unique to the individual and with changes in behaviour over the…
Table of Contents: Case study: Sensory diet for a child with Fragile X Syndrome who is hyposensitive to sensory input Information on the child: Age: 7Diagnoses: Fragile X Syndrome (FXS), Attention Deficit Hyperactivity Disorder (ADHD)Sensory profile: Hyposensitive to stimuli across multiple sensory systems Identified behaviour: Suggested Sensory Diet Plan Morning Routine (aims to get the…
People with Fragile X Syndrome (FXS) may have difficulties with speech and language. This can present as delayed development. Each person will have their own strengths and struggles, but those with FXS are commonly better at understanding language than using language themselves. Speech and language therapists can carry out an assessment to understand the areas…
Findings from the recent Rare Barometer Voice Survey, conducted by EURORDIS as part of regular surveys aiming to gather data on rare conditions through lived experiences, included important information from families living with FXS. Here is a report from FraXI based on the data collected from the survey. Demographic 9591 people living with rare conditions…
One hundred and five kilometres. Five cities. One vision. Bríd Quinn is a mum of two daughters who live with Fragile X Syndrome. She has challenged herself to run five half marathons across five European cities in their honour, and to raise awareness about Fragile X Syndrome. We had the opportunity to chat with Bríd…
If you have an idea and wish to fundraise for us, please let us know by emailing info@fraxi.org or filling out our Contact form. Maybe there is a Challenge event or a marathon, a local competition or a bake sale you would like to do for FraXI, all ideas welcome! Running the X for Fragile…
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Celebrating and supporting those living with Fragile X Syndrome and Fragile X Premutation Associated Conditions around the world
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