Fragile X UK/Patrick Wild Centre Family Day 2024

On what felt like the warmest and brightest day of the year so far, a number of Patrick Wild Centre (PWC) and SIDB researchers and clinicians joined the latest Fragile X Society UK Family Day, co-hosted by the PWC and Fragile X Society.

Written by Dr. Sam Booker, SIDB Group Leader:

This was to be the first meeting of the society in Scotland since the COVID-19 pandemic. Far from being a muted return to form, this was a vibrant meeting which nearly filled the generous conference space in the Edinburgh Park Novotel. Most exciting of all was that researchers were in the minority, with a broad range of Fragile X Syndrome (FXS) families from across Scotland and further afield (even Norfolk) in attendance. Aside from a lovely selection of coffee and cake, there were stands from The Patrick Wild Centre, The Fragile X Society, The Daisy Network: charity for woman with POI, Sensory Function in FXS (including Damien Wright and Leena Williams), Fusion art in Science (with Thomas Pratt) displaying the ‘my life’ project and Occupational therapist Tanya Van Dalen with her book sensory processing for sensory children.

A broad range of topics were covered in the talks of the day, all orchestrated with great aplomb by Pete Richardson of the Fragile X Society. The day started off with a truly inspiring talk from Hazel Brown of Cornerstone, who summarised their work to improve approaches to care in the community across Scotland. It was truly humbling to see how the work they are doing with people living with Fragile X is improving lives. Next, Edel Harris OBE gave a summary of a new consultation regarding the changes to the Adult Disability Payment. I (Sam Booker), then gave a summary of our groups work trying to understand critical periods of somatosensory cortex development in rat models of FXS, with a view to identifying when in early-life therapies may have greatest efficacy. Andy Stanfield gave a dynamic talk that wrapped around the lunch break, giving a detailed clinical appraisal of current and future therapeutic options for people living with FXS. Interspersed with personal considerations to current and future medicines, this was a talk that truly outlined what the future therapeutic landscape could (and should) look like. Then Tanya Van Dalen gave a fantastic talk covering approaches to managing sensory processing difficulties in neurodevelopmental conditions, which was both engaging and inspiring. Finally, Heather Renwick gave a synopsis of speech and language therapy options, based on their clinical experiences. Overall, the day was a fantastic opportunity to meet families and engage with the FXS community. I certainly walked away with new connections, inspiration for future research, and an even greater appreciation for the FXS lived experience.

Thank you to all the organisers from the PWC and Fragile X Society for making this event such a success.