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#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
250 views
"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
528 views
"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
105 views
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
454 views
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
857 views
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
440 views
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
178 views
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
43 views
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
776 views
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
137 views
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
1,770 views
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
264 views
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
159 views
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
142 views
Dancing to fight FXTAS
In January my dance school – PAD (Power Academy of Dance) performed our bi-annual dance show, our chosen charity is the Fragile X Society....
Mar 7, 2019
90 views
Video: Identifying and meeting the health needs of people with Fragile X Syndrome
We were delighted and so grateful to be invited to complete training about Fragile X for learning disability nursing students at Kingston...
Feb 13, 2019
106 views
Celebrating Our Achievements in Scotland, as the Project Comes to an End.
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...
Jan 29, 2019
204 views
"You become more understanding of other people's difficulties": Lou's experiences
This article summarises an interview with Lou (age 45) about her experiences of living with the Fragile X premutation, which was...
Jan 24, 2019
170 views
"It's just daily life": Brianna's experiences of being a Fragile X premutation car
This article summarises an interview with Brianna about her experiences of living with the Fragile X premutation, which was conducted as...
Jan 24, 2019
111 views
"Knowledge is Power": Grace's experiences of being a Fragile X premutation carrier
This article summarises an interview with 'Grace' (age 45) about her experiences of living with the Fragile X premutation, which was...
Jan 24, 2019
167 views
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