We’re incredibly proud of identical twins Freya and Zoe Woods, who recently took part in The One in the Park  5K event in Greenwich on Sunday 26 October 2025, all to raise funds and awareness for the Fragile X Society. Both Freya and Zoe have Fragile X Syndrome, and were keen to give something back to the charity that supports families like theirs. Dressed in our official Fragile X Society clothing, the twins were cheered on by members of the public as they tackled the scenic

As autumn has settled in and the new school year is firmly in progress, it’s a good time to reflect on how young people connect with one another, both in person and online. For many, friendships and peer connections bring joy and belonging. But for others, especially children and young people with additional needs, social interactions can sometimes be complicated and even stressful. That’s why Anti-Bullying Week , coordinated each November across the UK, is such an important

by Jane Oliver - Senior Families & Professional Advisor Do you have a diagnosis of FXTAS and are struggling to find an appropriate exercise routine? There’s growing evidence showing just how important safe, regular exercise is if you have Fragile X-associated Tremor/Ataxia Syndrome (FXTAS). FXTAS is sometimes described as a “use it or lose it” condition, which can sound harsh, but it simply highlights how vital movement is in maintaining strength and function. Exercising regu

A New Partnership with Queen’s University Belfast and a Stronger Voice for Families As part of Fragile X Awareness Day on 10 October 2025, we are pleased to share a regional media feature that has been sent to all major newspapers and media outlets across Northern Ireland. This article is part of our continued work to shine a light on the lived experiences of families affected by Fragile X Syndrome and to highlight the importance of continued support, understanding, and resea

On Friday 10th October, landmarks across Sunderland were beautifully lit in blue to raise awareness of Fragile X Syndrome, thanks to the support of Sunderland Council and the incredible efforts of Kay and Janice. Iconic sites including Penshaw Monument shone brightly throughout the evening, creating a powerful visual statement in honour of families affected by Fragile X. This public show of support marks another year that the Robinson family and their local community have wor

As part of the Fragile X Society’s 35th Anniversary, we’re proud to introduce Sabrina Kinsella a passionate parent, and one of our...

How Life with Fragile X in the UK Has Evolved — and What the Next 35 Years Could Bring “As a small charity, our strength has always come...

Autumn brings so many seasonal joys – from crisp walks through fallen leaves to cosy evenings at home. For families living with Fragile X...

by Jane Oliver - Senior Families & Professional Advisor Caring for someone with Fragile X syndrome can bring additional pressures....

Harmony Biosciences has shared the results of their Phase 3 trial RECONNECT Study. Unfortunately, the study did not meet its primary...

Sensory Frontloading: What is it and how can it help? Transitions can be tough for many children and young people with Fragile X...

We are delighted to share that James and Chris will be taking on the Yorkshire Marathon  this October in support of the Fragile X...

Throughout September 2025, Lewis is taking on an incredible personal challenge to raise awareness and funds for the Fragile X Society UK....

from Jane Oliver, Senior Families and Professionals Advisor (Adult Enquiries). 🆕 New Quick Guides to Adult Life with Fragile X Syndrome...

Supporting Learning with Numbers: Highlights from Our Recent MathMIND Webinar We were delighted to welcome families and professionals to...

✏️ Back to School: Helping You and Your Child Feel Prepared As we begin the summer holidays, many families will already be thinking ahead...

My name is Katie Quinn, and I have just started a PhD looking into Fragile X and the impact of being a caregiver for this condition....

A health research company, Global Market Access Solutions, is conducting parent interviews to learn more about the experience of...

Moving from ESA to Universal Credit? Here’s what you need to know. If you or someone in your family is on income-related Employment and...