Fragile X Family Day 2025: A Day of Support, Stories, and Science
On the 22nd of March 2025, the Patrick Wild Centre and the Fragile X Society came together to host Fragile X Family Day in Edinburgh – a special event designed to bring families, researchers, and professionals into the same room to share knowledge, experiences, and a sense of community.
The day welcomed a mix of attendees: families living with Fragile X Syndrome, professionals offering support, and researchers sharing their latest scientific advances. It was a space where people could connect over shared experiences, ask questions, and find encouragement in the stories and progress being shared.
The morning began with a moving and deeply personal talk by Olia Hercules, a mother and professional chef, reflecting on receiving her son Wilfred’s diagnosis and the emotional challenges that came with it. Her story highlighted the emotional challenges families can face, but also the power of finding support through community.
Clare Kassa, CEO of SIBS, followed with an insightful talk on the experiences of siblings of disabled individuals – touching on both the joys and the often-overlooked difficulties siblings face. She emphasized the importance of recognising and supporting siblings throughout their lives, and mentioned free resources available for schools and families.
The final talk before lunch came from Edel Harris, who shared her son Ross’s journey navigating young adulthood and relationships while living with Fragile X Syndrome. Her touching account of Ross’s love story with his partner Jamie was both joyful and inspiring – offering hope and a reminder of the value of celebrating each person’s unique path.
In the afternoon, the focus shifted to research. Dr Andrew Stanfield, Director of the Patrick Wild Centre, gave updates on ongoing studies, including the RECONNECT cannabidiol trial and a national survey of caregiver perspectives on gene therapy, which is being carried out by Sarah Eley. Talks also covered the use of large-scale health data to study Fragile X prevalence and underdiagnosis in the UK, led by Andrew McKechanie. Dr Stanfield also introduced two exciting studies: TouchFX, led by Dr Damien Wright, which aims to improve tools for measuring sensory issues, and MatheMatical Inclusion for NeuroDiversity, a project focused on supporting strong numeracy development in neurodiverse children.
The final talk of the day was delivered by Dr. Sundus Alusi, who provided valuable clinical insight into Fragile X-associated tremor/ataxia syndrome (FXTAS), a condition that can affect older adults with the Fragile X premutation.
The event wrapped up with a relaxed social hour, offering space for families to chat with researchers, ask follow-up questions, and connect over coffee and creativity. Several interactive stations invited participation: Fusion: Art Meets Science led a vibrant art station as part of the MyLife project, encouraging families to create artwork inspired by their lived experiences with genetic conditions. Other stations included the Fragile X Society, Damien Wright presenting the TouchFX study, Contact – a charity supporting families with disabled children, and Gaia Scerif, showcasing the MathMIND project focused on numeracy in neurodiverse children.
It was a day filled with empathy, understanding, and a shared sense of purpose. Above all, Fragile X Family Day reminded everyone in the room that they are not alone.
