Over the past 6 and a half years, we have been very fortunate to be able to run a dedicated Scottish Project to provide support to individuals and families with Fragile X, as well as educate and raise awareness amongst professionals. This project has run in addition to our UK-wide work, and was established thanks to specific funding being available in Scotland.
Many of you will have had the pleasure of interacting with Sandra Thoms (our Support and Development Worker for Scotland) over the past years. It is thanks to Sandra that the post in Scotland has been such a great success. We are so proud of what we have been able to achieve through this post. We have included some highlights below:
Our Scottish community of individuals and families with Fragile X has grown
We have responded to hundreds of enquiries from Scottish members, providing information, practical guidance and face-to-face training.
Establishing a training program for Clinical Psychology trainees at Edinburgh University, in partnership with the Patrick Wild Centre.
Hundreds of professionals across Scotland, from various professions, have now been educated to recognise and best support people with Fragile X. This includes our 'Educate to Empower' Project (funded via Big Lottery Awards for All Scotland), where we conducted roadshows to raise awareness of the importance of recognising and diagnosing Fragile X.
Creation of a Scottish Services Routemap, designed with families, to help ensure families are aware of services they can access for support.
Creation of a Fragile X eLearning course (in partnership with Cornerstone) to educate professionals about Fragile X. This has been popular throughout the UK and beyond.
There are also many other aspects of our work through this project, of which we are extremely proud.
We are thankful to the funders who generously supported the project and allowed us to conduct this great work. We are also so grateful to those who have provided funding to support this work, as well as to our friends at Cornerstone, the Patrick Wild Centre (University of Edinburgh) and all the other organisations with whom we have worked closely during this project.
Sadly, despite our best efforts we have not been able to secure further funding to continue this work in Scotland, meaning that this project will be coming to an end at the end of February 2019. We are all very sad and Sandra will be greatly missed, though we choose to use this as a time to celebrate all that we have achieved.
"It's been a privilege to work with so many amazing families and professionals. It has been a highlight of my career."- Sandra
Our UK-Wide Support
Though this particular project is coming to an end, we are proud to run a UK-wide helpline service, which is accessible to all those wanting to know about Fragile X (people with Fragile X, families and professionals). You can contact us via the details below:
Enquiries about children: Caroline Pringle (01371875100; caroline@fragilex.org.uk)
Enquiries about adults: Jane Oliver (01371875100; jane@fragilex.org.uk)
For anything else: info@fragilex.org.uk
We are here to speak about anything you need: from new diagnoses, behaviour, independent living, to benefits… just pick up the phone or send us an email.
If you have any questions about this project or this article, please do get in touch.