Fragile X Society Blog

Mar 25, 2020

Open letter from Minister Vicky Ford to the SEND Sector

Parliamentary Under-Secretary of State for Children and Families, Vicky Ford MP, has issued an open letter for children and young people wit

218 views

Mar 24, 2020

Ava and Ella's hair donation

Tracy shares her story of daughters Ava and Ella's hair donation for the Little Princess Trust - and fundraising for The Fragile X Society

238 views

Mar 12, 2020

Cancelled: Family Weekend at Thomley, May 2020

Our planned Family Weekend at Thomley, May 2020, has been cancelled due to current situation with Coronavirus. Further details to follow.

41 views

Jan 30, 2020

Fragile X Premutation Associated Conditions (FXPAC) Statement

A European Fragile X Network meeting discussed the term FXAND and recent research on conditions affecting Fragile X premutation carriers.

1,371 views

Jan 28, 2020

Growing up with Fragile X: one family's story

Heather shares her experiences of growing up with brother James, who has Fragile X

2,518 views

Jan 28, 2020

Bridie's Fabulous Fashion Show!

In November 2019, Bridie organised a Fashion Show to raise funds, and awareness, for The Fragile X Society.

111 views

Jan 23, 2020

Using Social Stories from Adolescence into Adulthood (Part 2)

This article follows on from our first ‘snippets of advice’ information using social stories for early years to adolescence (click here...

455 views

Nov 28, 2019

Families in Birmingham: We need you to help with our film!

The up-coming Rare Film Festival, will shine the light on the experiences of people with rare conditions (affecting fewer than 1 in 2000...

88 views

Nov 28, 2019

The Fragile X Community's Views on Screening

Recently, Dr Felicity Boardman and colleagues from Warwick Medical School conducted a study to investigate the implications of genetic...

1,246 views

Nov 27, 2019

Fragile X Podcasts

Podcasts are a fantastic way to get informed on the go. We are delighted to be able to signpost you to some fantastic Fragile X-related...

619 views

Nov 26, 2019

We Need You! Opportunity for a Volunteer Grants Officer

We are looking for an individual who can use their experience in grant writing to further the work of our passionate, small, national...

51 views

Nov 26, 2019

Welcome, Kate!

Welcome Kate, our new Administrative and Communications Coordinator! We are delighted to welcome Kate Williams to our team as...

93 views

Nov 26, 2019

Are you interested in participating in a research project? If so, we'd love to hear from you!

We have been supporting Dr Nermin Khalil in recruiting for her study, “Cognitive Emotional Dysregulation of FMR1 Premutation Carrier...

353 views

Oct 10, 2019

Fragile Not Broken: A Documentary

Phoebe created this wonderful documentary about her family's Fragile X diagnosis story. Thank you so much Phoebe for sharing this...

1,530 views

Oct 10, 2019

"I wanted to create a safe space for people who have Fragile x to feel like they're not alone."

Amanda shares why she started her podcast and blog about her experiences of Fragile X, and much more. "I started my podcast for a few...

109 views

Oct 9, 2019

Our Fragile X Awareness Day Video is launching at 7am on 10th October!

Rather than sharing simple facts this Fragile X Awareness Day, we wanted to share a snapshot of real, family life with Fragile X...

242 views

Oct 8, 2019

Lisa's Xtraordinary Charity Race Night Raises over £800!

On Saturday 28th September 2019 I held a race night with a difference to raise money for Fragile X. Instead watching a horse race on a...

100 views

Oct 8, 2019

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...

48 views

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...

40 views

Oct 4, 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...

120 views

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