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Coast to coast, east to west
This is the story of how my 47 year old brother-in-law Alec, who has Fragile X syndrome, completed a gruelling 400 mile cycle ride from...
Jul 19, 2019
Wedding Gifts with an Impact
A wedding is a fantastic time to celebrate and recognise the people and the things most special to you, and the opportunity to have a day...
Jul 16, 2019
Ian saves the day (Don’t try this at home)
Ian tells us why he ended up running a half marathon despite having done no training! “Anna, my wife, is a family member of the Fragile X...
Jun 28, 2019
Learning Disability Pride – we are proud of who we are!
"People with learning disabilities have been kept out of community life in the past. Not any more. We are going to ordinary schools with...
Jun 18, 2019
Paula's Message for Healthcare Professionals
In a recent article in the Archives of Disease in Childhood (ADC), Paula shared her experiences of growing up with Fragile X Syndrome....
Jun 4, 2019
My sister’s “ordinary life” By Saba Salman
My sister Raana recently made a film about her everyday life that was shown to an audience of 130 people at a conference in London. This...
May 15, 2019
#fragilextraveller: My Amazing Holiday to Australia
Hello to all you lovely people, I’m Matt #fragilextraveller and with the help of my Mum & Nan I have been on an amazing holiday to...
May 14, 2019
"Bye, Jean!"
What I am going to write - what has happened – has made me the person I am today. In this piece jean reflects on her children growing up...
May 14, 2019
"I go home feeling better about everything": How Kunal's art group helps.
In this piece Kunal shares about how his local art group helps him I like Artability - it helps me to enjoy spending time with my friends...
May 14, 2019
Puberty & Growing Up
Using a time line to explain growing up Published 14 May 2019, updated 8 July 2020 Puberty has been on the radar recently on the advice...
May 14, 2019
UK Fragile X-Associated Tremor/Ataxia Syndrome Clinic: An Interview with Dr Alusi
In this piece we interview Dr Sundus Alusi who is developing a service for people with, or concerned about, FXTAS, as part of her...
May 14, 2019
Our Story, and how the Society has helped us.
A mother writes about her daughter’s journey from childhood diagnosis, through school and college and into adult life and employment, and...
Apr 24, 2019
A Race to Raise Awareness
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...
Apr 18, 2019
A Race to Raise Awareness
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...
Apr 18, 2019
New Cardiff Research Group Aim to Develop Medications for Fragile X Syndrome
The recently-established Medicines Discovery Institute is based within Cardiff University and aims to translate the latest in scientific...
Apr 11, 2019
Charities Celebrated at Royal Reception
The National Council for Voluntary Organisations (NCVO) has been championing volunteering and the voluntary sector for 100 years. To mark...
Apr 11, 2019
Sensory 'Frontloading': What is it and how can it help?
On talking to parents on the advice line one common issue is anxiety levels when transitioning from one activity to the next, e.g. going...
Mar 29, 2019
Our Fragile X Facts
You will often see lists of facts about Fragile X Syndrome being circulated, detailing medicalised information focusing on the challenges...
Mar 14, 2019
Making changes to routines, plans or expectations more manageable: A new 'Flexible Scheduling
What is the project? An exciting project which aims to develop a new system to help families address rigidity in their child’s routines...
Mar 8, 2019
A funny thing happened on the way to Homebase
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...
Mar 7, 2019
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