We are delighted that chef, author and Fragile X Society Ambassador Olia Hercules will be hosting a special online dumpling workshop to help raise funds for the Fragile X Society. The workshop will take place on Sunday 11 October at 4.00pm UK time via Zoom. Olia has a very personal connection to Fragile X, with three generations of her family affected by Fragile X and associated conditions. Speaking about the event, Olia says that the Fragile X Society has supported her famil

We are delighted to welcome Bella to the FXS and look forward to working with her to help raise awareness of Fragile X and support our wider community. My Name is Isabella McGrail but I go by Bella! I am currently a student Nurse at Kington University London and alongside my studies I work as a Play and Youth support worker for children and young adults with additional needs. I have a passion for helping others, raising awareness, and helping in the community where I can so h

We are delighted to have Aaminar involved and look forward to working with her to help raise awareness of Fragile X and support our wider community. I am currently a first-year PhD student at the University of Warwick with my research focus “Exploring Quality of Life in Individuals with Fragile X Syndrome”. Quality of life is a broad concept that extends beyond physical health. Exploring quality of life leads to understanding what matters most to an individual and the factor

Over the summer, we invited families to share some of their favourite photos and memories with us. We had a lovely response, and Sabrina has brought them together into this special video celebrating our Fragile X community and the moments that made the summer memorable. A big thank you to everyone who sent in photos and helped make this video possible. We hope you enjoy watching it as much we did.

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

We’re sharing this webinar from the National Fragile X Foundation and the LivJoy Foundation, exploring how anxiety presents in females with Fragile X Syndrome, how to recognise it, and practical approaches to support across the lifespan.

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