B was diagnosed with full mutation of Fragile X syndrome at the age of 6 and has shared her journey to help raise awareness and understanding. Throughout primary and secondary school, B often felt misunderstood. Staff had not heard of Fragile X and they didn't understand how to support her learning and emotional needs. She found maths particularly difficult and sometimes felt excluded from activities or judged by other pupils for being given different work. Despite these cha

We would like to say a huge thank you to Abbie and Rich, who will be taking part in the Manchester Marathon in April 2027 to raise funds for the Fragile X Society. This will be Abbie’s first marathon and Rich’s second, and they have chosen to support a cause that holds particular significance for their family. Fragile X syndrome has had a considerable impact on their family, and they have experienced first-hand the importance of the support and advocacy provided by the Societ

We were delighted to welcome Sabrina Kinsella, our new Scotland Contract Manager, to the Fragile X Society office recently. Sabrina joined the Society earlier this year and has already become a valued member of our team. As both a registered nurse and a parent of a child with Fragile X, she brings a wonderful combination of professional knowledge, personal experience and enthusiasm to her role. Her visit was a great opportunity to spend some time together in person, meet the

Mum, Rachael Woods was setting out on a practice run from the doorstep of her home, with twins Zoe and Freya, 27, in preparation to do a 5K event for the Fragile X Society. The girls were sporting their Fragile X T-shirts, when mum Sarah Ker-Lindsay drove past Rachael’s house. “I instantly recognised the blue T-shirt as belonging to the Fragile X Society,” said Sarah, who was on a family trip to the garden centre. “We drove past again to double check, and when I spotted the F

A family's determination to improve care for people affected by Fragile X syndrome has helped bring about the launch of a pioneering new NHS hub in Leicester. Chris and Alex McQuade, whose two children have Fragile X syndrome, began asking what could be done differently after experiencing first hand how difficult it can be for families to find joined up specialist support following a diagnosis. Those conversations, initially with Consultant Clinical Geneticist Professor Julia

Fragile X Awareness Day takes place on Saturday 10th October and, as always, it is an important opportunity to raise awareness, improve understanding and highlight the experiences of individuals and families affected by Fragile X. This year, the Fragile X Society is using Awareness Day to shine a light on some of the exciting work taking place across healthcare, universities, research and the wider Fragile X community. A new Fragile X holistic care hub in Leicester One of the

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 event was originally planned for Sunday 11th October, but unfortunately it has now had to be postponed. We are very sorry for any disappointment this may cause. The good news is that Olia remains very keen to host the workshop, and we are now working together to arrange a new date in early 2027.

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