A huge thank you to Nicola Hart and her sisters in law for completing the Kiltwalk at the weekend in support of the Fragile X Society. Their fantastic effort helped to raise both funds and awareness for Fragile X, and we are very grateful for their support. We would also like to thank everyone who sponsored them and encouraged them along the way. Fundraising like this makes a real difference and helps us continue providing information, advice and support to individuals and fa

Over recent months, we have continued to grow our Developing Experts Programme, building relationships with universities and helping future health and care professionals develop a better understanding of Fragile X. As part of this work, we recently visited both Keele University and the University of Warwick. Although the two visits were quite different, both showed a real enthusiasm for strengthening knowledge of Fragile X and involving students and researchers in our work. A

In the lead up to our recent conference, centred around living with Fragile X, Sabrina Kinsella reached out to families across our community with a simple but powerful idea, to capture meaningful, everyday moments with their loved ones with Fragile X. The response was truly heart warming, with families generously sharing clips that reflected joy, connection and the unique personalities of their children and family members. Sabrina brought these together into a beautiful video

We are delighted to share that Sabrina has recently partnered with the Fragile X Society to help raise awareness of Fragile X syndrome and to champion the voices of families at the heart of our community. Following her son’s diagnosis, Sabrina became determined to make a difference. Like many parents, she experienced first hand how limited awareness and understanding can be at the point of diagnosis. Rather than stepping back, she chose to step forward. What began as a person

We are pleased to announce that Thetford Golf Club has selected the Fragile X Society UK as their chosen charity. This is wonderful news for our community and we are incredibly grateful to the club members for selecting us. Over the coming year, Thetford Golf Club will be organising fundraising activities and events to help raise both awareness and vital funds to support families affected by Fragile X syndrome across the UK. We would also like to say a special thank you to Ma

We are delighted to congratulate Katie Quinn on taking first place in the flash talk competition for doctoral students at the LifeArc conference earlier this month. Katie impressed judges and delegates with a powerful and deeply personal presentation exploring the lived experience of becoming a carer for someone with Fragile X. The annual LifeArc conference brings together doctoral researchers from across the UK, challenging them to present their work in concise and impactf

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