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What Teachers Should Know About Fragile X Syndrome
Students with Fragile X are prone to hyperarousal: here are some tips to minimise hyperarousal and anxiety & maximise focus and cooperation.
Sep 17, 2019
We want to hear your views!
It is really important to us to be able to take into account the views of our community when planning the future of the Society. So, your...
Sep 11, 2019
"It’s goodbye from me". Noel looks back fondly at his time as our Administrative Coordinator
"Back in the harsh winter of early 2018 when the “Mini Beast from the East” was preparing to send blizzards our way, the Fragile X...
Aug 30, 2019
Seeking an Honorary Treasurer
Do you have a background in finance, accounting or bookkeeping? We are looking for an amazing volunteer to join our Board of Directors as...
Aug 1, 2019
Opportunity to join the team as Managing Director
Fantastic and rewarding opportunity to run a small but national charity, and make an amazing difference to people with Fragile X
Jul 23, 2019
Frozen: Iain's icy adventure
A supporter tells us what it was like walking across an East Asian lake under the watchful eyes of wolves! "On 3rd March this year I flew...
Jul 23, 2019
Fantastic Facebook Fundraisers!
We have been absolutely blown away by our incredible supporters on Facebook who, this calendar year alone, have raised over £8,000! This...
Jul 23, 2019
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
Are there changes in brain function in carriers of Fragile X, who do not have clear FXTAS symptoms?
Functional MRI in carriers of the FMR1 premutation: Study results from University of Edinburgh and the Patrick Wild Centre In 2013 to...
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
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