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It's Almost Fragile X Awareness Day!
Thank you to everyone who has requested packs to support your activities for Fragile X Awareness Day activities this Thursday, 10th...
Oct 8, 2019
Three ‘Pillars’ to deliver better support and care for disabled children and their families
"To make a real difference to the lives of disabled children, the Government must make them a priority, including by appointing a...
Oct 8, 2019
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS): Diagnosis, Treatment and Management.
In this talk from our 2019 Conference, Dr Alusi discusses the diagnosis, treatment and management of FXTAS, as well as her clinic at the...
Oct 4, 2019
Using Social Stories from Early Years to Adulthood (Part 1)
Social stories are used to give individuals clear information about people, events and situations and to introduce a new experience.
Sep 24, 2019
Update on our Staff Team
We are writing to give an update in relation to some of the recent chances to our staff team. You may have seen that we recently...
Sep 24, 2019
Fragile X Conference 2019: Videos and Feedback
Thank you to all of you who joined us for our conference on 7th September at the University of Birmingham Medical School! We are so...
Sep 19, 2019
Understanding and Intervening with Emotional Outbursts: Research Update, Dr Kate Woodcock
In this Research Update, Dr Kate Woodcock discusses the work of her research group which aims to understand syndrome specific factors...
Sep 17, 2019
Assessing Anxiety in Fragile X Syndrome: Research Update, Dr Jane Waite
In this talk from the 2019 Fragile X Conference (7th September, University of Birmingham Medical School), Dr Jane Waite gives an update...
Sep 17, 2019
Can you help with our video for Fragile X Awareness Day?
We are creating a new video to show for Fragile X Awareness Day (10th October). We need short clips of brothers and sisters talking...
Sep 17, 2019
Gene Editing and Fragile X: The Status of Research and What the Future Might Hold.
‘Fixing’ genes using editing has been getting lots of press, for both good and bad reasons. But as a potential alternative to a...
Sep 17, 2019
Fragile X Syndrome and Adulthood: Talk by Dr Andy Stanfield
We were delighted to welcome Dr Andy Stanfield (Patrick Wild Centre, University of Edinburgh) to speak at our 2019 Fragile X Conference...
Sep 17, 2019
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
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
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