On March 16th 2016 we called on Members of the National Assembly for Wales to better recognise and understand the needs of individuals and families living with Fragile X. Approximately 800 individuals in Wales have Fragile X Syndrome and a further 8000 may be Fragile X carriers.
Despite this high prevalence, there are still families experiencing problems accessing diagnosis and appropriate services which creates real challenges. The aim of this event was to raise the profile and understanding of Fragile X amongst those who are making decisions about policy and services.
Together, Becky Hardiman (CEO), Dr Lucia Elghali (Director) and Dorcas Slaney (Director) used evidence from research and lived experience to highlight the vital importance of recognition and understanding of Fragile X and the application of this information to tailor supports, to help people reach their full potential. In particular, we were emphasising that utilising information provided by a Fragile X Syndrome diagnosis can lead to meaningful improvements in support, when compared to the application of generic interventions, such as those aimed at individuals with autism.
We were delighted to have support from Eluned Parrott AM, Mark Isherwood AM, Kirsty Williams AM and Alun Ffred Jones AM through their attendance. We are particular grateful to Eluned Parrott for hosting this important awareness event, who states:
“It was a pleasure to host the Fragile X Society in the National Assembly today. Fragile X is the most common inherited form of learning disability, and it is only right that members of the Assembly have the chance to hear about the experiences of those affected and their families first-hand. I hope that today’s event will be a success in putting Fragile X into members’ consciousness, so that when we are developing public policy in health and education, we will be better informed about the condition and the needs of those who have it.”
Additionally, Mark Isherwood - who closed the event - shared his view:
“As Chair of the Cross Party Autism Group, I welcomed the opportunity to attend and speak at the Fragile X Awareness Event. We must embrace the social model of disability, give people choice and control, and stop using diagnosis as the gateway to services. Policy and services should consider the specific needs of individuals, taking into account any genetic diagnoses, such as Fragile X, and when people are diagnosed with Autism, they should also be tested for Fragile X".
Thank you to all of the families from Wales who attended to advocate for the Fragile X community and to the professionals from autism services and Cardiff University who took the time to come to learn more.
This is one important step towards ensuring all those living with Fragile X in Wales get the effective the support they deserve and look forward to seeing where this will lead.
Click here to download the slides of Becky's presentation from the event.
Click here to download the slides of Lucia's presentation from the event.