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Annie runs the Lisbon Marathon
On 9 October this year, Annie Whiteside will be running the Lisbon Marathon to raise funds and awareness for Fragile X Society.
Aug 4, 2022
39 views
Fragile X and FXTAS: my family's story
Emma has shared with us her family's story of Fragile X and FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome) Emma tells us, "I had...
Aug 4, 2022
775 views
Hello from Northern Ireland!
Jan Wright, our contract worker in Northern Ireland, has shared this update on what's been happening in Northern Ireland Hello from...
Aug 4, 2022
132 views
Light up a landmark for Fragile X Awareness Day on 10 October!
Please help us raise awareness for International Fragile X Awareness Day on 10 October by asking councils to light up a landmark in blue!
Jul 13, 2022
509 views
Changes to the benefits system in Scotland
Information for our families in Scotland from our Families and Professionals Advisors
Jul 7, 2022
102 views
Dad's FXTAS journey
Sarah has shared this story about her father's FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome) journey.
Jul 6, 2022
799 views
Eating and mealtimes
Caroline Pringle, Families and Professionals Advisor for Child Enquiries, shares some strategies for eating and mealtimes with your child.
Jun 30, 2022
778 views
Highlights from our Family Weekend at Thomley
A few highlights from our Family Weekend at the fantastic Thomley in Worminghall. Thanks to everyone who joined us!
Jun 29, 2022
111 views
Online safety
Caroline Pringle, Families and Professionals Advisor for Child Enquiries, shares some tips for keeping your children safe online.
Jun 16, 2022
82 views
Luke and Jas's marathon week for Fragile X
Luke Atterbury and friend, Jas, have recently tackled not one, but two, challenges in aid of the Fragile X Society
May 26, 2022
40 views
Mencap's Big Learning Disability Survey
Mencap would like to invite people with a learning disability to take part in their 2022 Big Learning Disability Survey! Have your say:
May 19, 2022
48 views
Jonathan and Darcy run the Oxford Town and Gown
Father and daughter team run 10k race in aid of Fragile X Society
May 19, 2022
56 views
Kunal's holiday to Dubai
Kunal wanted to share with you what he most enjoyed on his recent holiday to Dubai!
May 19, 2022
91 views
Update on inclusive terminology for Fragile X conditions
In April 2022, the term ‘mental retardation’ was officially removed from the expanded name of FMR1, and more inclusive names adopted.
May 10, 2022
526 views
Getting ready for the new school year
Caroline Pringle, our Families and Professionals Advisor for Child Enquiries, shares some tips for the new school year
May 5, 2022
96 views
New pathways of support for Fragile X Syndrome
Launch of Fragile X International (FraXI), a new organisation for families and healthcare professionals who live or work with Fragile X
Apr 19, 2022
152 views
Eradication of 'mental retardation' from language describing Fragile X Conditions
New and inclusive terminology to be adopted in scientific and clinical literature, improving respect for neurodiversity
Apr 13, 2022
324 views
Ukraine
Our Fragile X Society here in the UK is part of a growing network of countries dedicated to supporting the Fragile X Community and I...
Mar 31, 2022
66 views
Barriers to participating in clinical trials
What are they and how can they be addressed by researchers of medication trials for Fragile X Syndrome?
Mar 24, 2022
96 views
Road to Recovery Project: overview, update and final recruitment call
Carers and their children with learning disabilities invited to share their experiences of COVID-19 pandemic using fun, inclusive activities
Mar 16, 2022
60 views
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