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

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

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