Today I’d like to share some really exciting news about plans to develop a Specialist Fragile X Hub in Leicester and how you can be involved!
The Vision
Professor Julian Barwell, Clinical Genetics, together with Alex & Chris McQuade who are parents of two boys with Fragile X syndrome have been working together for a few years to raise awareness of Fragile X in the medical and wider community and think about how best to support similar families in the future. They have been forming ambitious plans to build the first Fragile X specific holistic and integrated clinic in the UK starting with an individualised care plan. The aim is to have a social, emotional and educational component that will consider the needs of not only affected individuals but crucially also the whole family, including couples, other siblings and other relatives. As part of this and for those interested, we hope to be able to offer research studies aiming to improve the lives of individuals with Fragile X, although there will be no obligation to take part. While initial assessments would need to be in person future appointments could be virtual where possible and they have an innovative approach of wanting to "train the trainer/teach the parents" so spending more time with you to help with ideals, techniques and tips so that you are empowered to help support your loved ones.
Progress So Far
Julian, Alex and Chris obtained funding for and delivered a hugely successful Fragile X conference for medical and education professionals, which the Fragile X Society also spoke at and contributed to, in May 2022 https://www.youtube.com/watch?v=grqeptprL-E
After the conference, Julian and the team at the Leicester Royal Infirmary purpose-built Research Space team agreed to participate in a current cannabinoid-based trial called RECONNECT. Leicester has the highest number of recruits for this international study which aims to help children and young people cope with the stresses of everyday life and provide a better emotional platform for future learning. Research Space is a quiet area of the hospital that has been carefully designed with children with additional needs and autism in mind with a sensory room and multiple distraction aids, play therapists and highly experienced and skilled paediatric nurses.
Next Steps
Supported by the Fragile X community and the Fragile X Society, the next step is to demonstrate to the University of Leicester NHS Trust that we need a service and experts in Fragile X and therefore the Leicester initiative is planning a "medical supermarket" event in October this year. At this event "you", the families, will get to meet and hear from Julian, Chris and Alex about their plans and more importantly there will be stalls to meet the other stakeholders, which we hope will include genetic counsellors, a GP with a special interest in Fragile X, family counsellors, psychologists, speech and language therapists, charity support networks and play therapists. There will be an opportunity to meet the research team and talk about updates in Fragile X related therapies.
What We Need From You
PLEASE, please put a note in your diary for October. The team is in the early days of planning the event and we will bring you more details soon. But they need you, we need you and the FX community needs you! In order to demonstrate that FX has a community requiring support, we need you to attend the event so that the trust can see first-hand the audience/parents/guardians/carers who will support and use a Fragile X clinic in the UK.
It's early days, but this novel, bold and exciting Leicester initiative is working with our community and thinking about the wider needs of families with Fragile X. Based in the middle of the country and all under one roof, this is our chance to develop a brighter future together.