Fragile X and FXTAS: my family's story
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![Fragile X and FXTAS: my family's story](https://static.wixstatic.com/media/038e80_73a3975ef6a74ccbb4a36af44b3890b7~mv2.jpg/v1/fill/w_480,h_386,fp_0.50_0.50,q_90,enc_auto/038e80_73a3975ef6a74ccbb4a36af44b3890b7~mv2.jpg)
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...
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![Hello from Northern Ireland!](https://static.wixstatic.com/media/038e80_f9a424b6f41443c39a7bf6bc2917f1a8~mv2.jpg/v1/fill/w_514,h_386,fp_0.50_0.50,q_90,enc_auto/038e80_f9a424b6f41443c39a7bf6bc2917f1a8~mv2.jpg)
- Aug 4, 2022
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...
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![Light up a landmark for Fragile X Awareness Day on 10 October!](https://static.wixstatic.com/media/038e80_986766737efd4f14985f43d5d952d2bc~mv2.png/v1/fill/w_514,h_386,fp_0.50_0.50,q_95,enc_auto/038e80_986766737efd4f14985f43d5d952d2bc~mv2.png)
- Jul 13, 2022
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!
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![Changes to the benefits system in Scotland](https://static.wixstatic.com/media/038e80_453241ae442a4d5bb1ebd56b34628677~mv2.png/v1/fill/w_514,h_386,fp_0.50_0.50,q_95,enc_auto/038e80_453241ae442a4d5bb1ebd56b34628677~mv2.png)
- Jul 7, 2022
Changes to the benefits system in Scotland
Information for our families in Scotland from our Families and Professionals Advisors
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![Dad's FXTAS journey](https://static.wixstatic.com/media/038e80_04ba8acb1dba4f419de75f03d609df24~mv2.jpg/v1/fill/w_514,h_386,fp_0.50_0.50,q_90,enc_auto/038e80_04ba8acb1dba4f419de75f03d609df24~mv2.jpg)
- Jul 6, 2022
Dad's FXTAS journey
Sarah has shared this story about her father's FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome) journey.
713 views
![Eating and mealtimes](https://static.wixstatic.com/media/038e80_c3ac6185d2084cb2a1fe0120a295b81b~mv2.png/v1/fill/w_514,h_386,fp_0.50_0.50,q_95,enc_auto/038e80_c3ac6185d2084cb2a1fe0120a295b81b~mv2.png)
- Jun 30, 2022
Eating and mealtimes
Caroline Pringle, Families and Professionals Advisor for Child Enquiries, shares some strategies for eating and mealtimes with your child.
538 views
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![Highlights from our Family Weekend at Thomley](https://static.wixstatic.com/media/038e80_badb103b89f64edaa332fb4add9ec280~mv2.jpg/v1/fill/w_514,h_386,fp_0.50_0.50,q_90,enc_auto/038e80_badb103b89f64edaa332fb4add9ec280~mv2.jpg)
- Jun 29, 2022
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!
109 views
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- Jun 16, 2022
Online safety
Caroline Pringle, Families and Professionals Advisor for Child Enquiries, shares some tips for keeping your children safe online.
74 views
![Luke and Jas's marathon week for Fragile X](https://static.wixstatic.com/media/038e80_894869bb685148868903dac4cdf120b2~mv2.png/v1/fill/w_514,h_386,fp_0.50_0.50,q_95,enc_auto/038e80_894869bb685148868903dac4cdf120b2~mv2.png)
- May 26, 2022
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
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![Mencap's Big Learning Disability Survey](https://static.wixstatic.com/media/038e80_e9aa35bb26094002920c2ee8f1d6bf54~mv2.png/v1/fill/w_211,h_254,fp_0.50_0.50,q_95,enc_auto/038e80_e9aa35bb26094002920c2ee8f1d6bf54~mv2.png)
- May 19, 2022
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:
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![Jonathan and Darcy run the Oxford Town and Gown](https://static.wixstatic.com/media/038e80_65f46b84cfbe4db481287bbe422e75aa~mv2.jpg/v1/fill/w_514,h_386,fp_0.50_0.50,q_90,enc_auto/038e80_65f46b84cfbe4db481287bbe422e75aa~mv2.jpg)
- May 19, 2022
Jonathan and Darcy run the Oxford Town and Gown
Father and daughter team run 10k race in aid of Fragile X Society
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- May 19, 2022
Kunal's holiday to Dubai
Kunal wanted to share with you what he most enjoyed on his recent holiday to Dubai!
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![Update on inclusive terminology for Fragile X conditions](https://static.wixstatic.com/media/038e80_84f73537ab1a40608a5e33571f541da9~mv2.jpg/v1/fill/w_514,h_386,fp_0.50_0.50,q_90,enc_auto/038e80_84f73537ab1a40608a5e33571f541da9~mv2.jpg)
- May 10, 2022
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.
495 views
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- May 5, 2022
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
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![New pathways of support for Fragile X Syndrome](https://static.wixstatic.com/media/038e80_89da8992f156413bac16476dba6a61d3~mv2.jpg/v1/fill/w_514,h_386,fp_0.50_0.50,q_90,enc_auto/038e80_89da8992f156413bac16476dba6a61d3~mv2.jpg)
- Apr 19, 2022
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
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![Eradication of 'mental retardation' from language describing Fragile X Conditions](https://static.wixstatic.com/media/038e80_fd4d57966ac94b5388496b3a08b2fa2e~mv2.png/v1/fill/w_514,h_386,fp_0.50_0.50,q_95,enc_auto/038e80_fd4d57966ac94b5388496b3a08b2fa2e~mv2.png)
- Apr 13, 2022
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
288 views
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- Mar 31, 2022
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...
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![Barriers to participating in clinical trials](https://static.wixstatic.com/media/038e80_715a3903498a4a738a39ef3b589c517d~mv2.png/v1/fill/w_514,h_386,fp_0.50_0.50,q_95,enc_auto/038e80_715a3903498a4a738a39ef3b589c517d~mv2.png)
- Mar 24, 2022
Barriers to participating in clinical trials
What are they and how can they be addressed by researchers of medication trials for Fragile X Syndrome?
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![Road to Recovery Project: overview, update and final recruitment call](https://static.wixstatic.com/media/038e80_404ac588c73d4ea5a302e1a86f70999d~mv2.jpg/v1/fill/w_479,h_386,fp_0.50_0.50,q_90,enc_auto/038e80_404ac588c73d4ea5a302e1a86f70999d~mv2.jpg)
- Mar 16, 2022
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
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![Using Visual Aids](https://static.wixstatic.com/media/038e80_e5c69c05d85a4369a834f6d6637911c9~mv2.png/v1/fill/w_514,h_386,fp_0.50_0.50,q_95,enc_auto/038e80_e5c69c05d85a4369a834f6d6637911c9~mv2.png)
- Mar 2, 2022
Using Visual Aids
Caroline Pringle, Families and Professionals Advisor (Child Enquiries) shares top tips on using visual aids to support your child.
1,784 views
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