We were absolutely delighted to hear this wonderful news from one of our families and are so pleased to be able to share it with our community. Rhys, alongside Owen, trains twice a week with the Manchester United Foundation, showing real commitment and enthusiasm for football. Last year, Rhys was selected to represent the Foundation at the Genuine Cup in Houston, Texas an incredible and truly once in a lifetime opportunity. The Genuine Cup brings together teams from across t

We are delighted to share that Tim Egerton is taking on an incredible series of endurance challenges throughout 2026 in support of The Fragile X Society. Tim’s commitment and determination are truly inspiring, as he prepares to push himself across multiple events to raise awareness and vital funds for families affected by Fragile X. His challenge calendar includes: Lisbon Half Marathon, 8 March 2026 Newport Marathon, 19 April 2026 The Full Long Course Weekend, 26 to 28 June 2

A guide for families of children with Fragile X syndrome The Government is asking for feedback on proposed changes to the education system in England, including support for children and young people with Special Educational Needs and Disabilities. This is your opportunity to share what life is really like for your child and help shape future support. You do not need to be an expert to take part. Your experience matters. If you would like to learn more about the proposals, you

Rare Disease Research Education and Innovation in Action (RAIN Fest 2026) conference in Dublin Katie Quinn Ph.D at RAiNFEST The Rare Disease Research Education and Innovation in Action Conference (RAiN Fest 2026), was held at the University College Dublin (UCD) O’Brien Centre for Science on Saturday 28 March 2026. Organised under the All-Ireland Rare Disease Interdisciplinary Research Network (RAiN), a cross-border initiative co-led by University College Dublin and Queen’s Un

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 so proud of Mariana as she gets ready to run the Stockholm Marathon 2026  in support of The Fragile X Society. Taking on 26.2 miles is no small thing, and the fact that she is doing it to raise funds and awareness for families affected by Fragile X makes it even more inspiring. Every step she takes will help us continue providing trusted information, support and connection for families across the UK. Fundraisers like Mariana truly make a difference. The money she raise

In April, Phil will be taking on the London Marathon in memory of his wonderful father, who sadly passed away just under three years ago. Many of you may remember that Phil ran the marathon two years ago in his dad’s memory. This year, he is once again lacing up his running shoes to honour him, reflect on the love they shared, and turn that loss into something positive for others. Running 26.2 miles is never easy, but doing it in memory of someone so special carries an even d

Dissertation Lay Summary What do you think about hearing aids? Exploring the Perspectives of Adults with Learning Disabilities on Hearing Aids and Auditory Rehabilitation We are pleased to share this lay summary from Nathasha’ s dissertation research, which explores how adults with learning disabilities experience hearing aids and auditory rehabilitation. Using the voices and perspectives of adults with learning disabilities, this research highlights what works well, what can

Being online is now part of everyday life. Many children, young people, and adults with Fragile X enjoy using tablets, phones, and computers to watch videos, play games, learn new things, and keep in touch with others. For families, this can bring a mix of positives and some understandable questions about how best to offer support. People with Fragile X often bring real strengths to the online world. The internet can be a place where people feel confident exploring what they

James and Corina from North Lanarkshire have kindly shared the wonderful achievements of their son Fraser, aged 31, whose love of music continues to grow and inspire those around him. Over the festive period, Fraser successfully organised and performed a Christmas concert for friends and family. Playing the guitar, he entertained his audience with confidence and enthusiasm, creating a memorable and joyful occasion that everyone involved will treasure. Fraser has Fragile X Syn

We want to share an important update from Harmony Biosciences about the RECONNECT clinical trial. Harmony have released the following news, following their review of the trial data. We know how much hope and commitment families have invested in this study, so we are sharing the update here to keep everyone informed and supported. Participants involved in the trial will also be contacted directly by their clinical sites. Thank you to everyone in the Fragile X community who con

Elisa Castaldi PhD is a researcher at the University of Florence and is carrying out a fully remote study exploring the relationship between numerical and visuo spatial abilities. We are delighted to share a short video by Elisa, who is investigating the relationship between numerical and visuo spatial abilities, as well as the influence of genetic factors, specifically the Fragile X gene in its premutation range, alongside experiential and emotional factors. In the video, El

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

The UK National Screening Committee (UK NSC) has launched a consultation on screening for Fragile X. This is an important opportunity for individuals, families, professionals and organisations to share their views and help shape future screening recommendations. You can read the full consultation document using the link provided on the UK NSC website. The committee welcomes feedback from anyone with an interest in Fragile X or screening policy. The deadline for responses is 1

As Christmas draws near, it can be a wonderful time for family connection, celebration, and fun—but it can also bring big changes in routines, new sensory experiences, and social demands that can feel overwhelming for many people with Fragile X syndrome. Whether you’re caring for a child, teenager or adult, a bit of preparation and planning can help make the festive period calmer and more enjoyable for everyone. ________________________________________ Keeping routines steady

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