My name is Paula and I am 27 years old. I am a keen runner and I run with my local running club. I have been running for 2 years. My Fragile X causes me to suffer from anxiety, which can make me feel tired, breathless and agitated. So, I started running to improve my p...

You will often see lists of facts about Fragile X Syndrome being circulated, detailing medicalised information focusing on the challenges that people with the condition may face. However, this doesn’t fully represent Fragile X. In this piece, we celebrate the fact that...

What is the project?

An exciting project which aims to develop a new system to help families address rigidity in their child’s routines and expectations. While maintaining the optimal level of structure to minimise

challenging behaviours related to change.

Why are we doin...

Jeanie Kemp discovered she was a fragile X carrier only after the birth of her daughter Jessica’s first child James. James had lots of health issues as a baby but it was not until he was four that he was diagnosed with the fragile X full mutation. By that time he had a...

In January my dance school – PAD (Power Academy of Dance) performed our bi-annual dance show, our chosen charity is the Fragile X Society.  I wanted to raise awareness and some money to help the charity as my dad has FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome),...

We were delighted and so grateful to be invited to complete training about Fragile X for learning disability nursing students at Kingston University, by Daniel Marsden (Senior lecturer- Learning Disability Nursing). The aim of the talk (presented by Dr Becky Hardiman,...

Over the past 6 and a half years, we have been very fortunate to be able to run a dedicated Scottish Project to provide support to individuals and families with Fragile X, as well as educate and raise awareness amongst professionals. This project has run in addition to...

​This article summarises an interview with Lou (age 45) about her experiences of living with the Fragile X premutation, which was conducted as part of a recent study.
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Can you tell me a bit about yourself and your family?

So I am married and I have three boys. My fist...

​This article summarises an interview with Brianna about her experiences of living with the Fragile X premutation, which was conducted as part of a recent study.

Can you tell me a bit about yourself and your family?

I am 46 years old, almost 47. I am from Bristol origin...

​This article summarises an interview with 'Grace' (age 45) about her experiences of living with the Fragile X premutation, which was conducted as part of a recent study.

Can you tell me a bit about yourself and your family?

I am a premutation carrier who has two grown u...