A new e-learning course aimed at raising awareness of the little-known condition Fragile X Syndrome among professionals was launched yesterday.
The online tool has been developed by the Fragile X Society in conjunction with Cornerstone and is designed to help professionals to better support individuals and families affected by the condition.
Fragile X Syndrome is the most common cause of inherited learning disability. It can cause a wide range of learning, social, emotional and behavioural difficulties alongside problems with language and maintenance of attention. Each week, three children in the UK are born who are fully affected by Fragile X, while 40 children are born each week in the UK who are carriers of the Fragile X gene.
The e-course was developed following the appointment just over a year ago of Scottish Family Support Worker Sandra Thoms, Scotland’s first dedicated support worker for families affected by Fragile X Syndrome.
A former manager with Cornerstone for 2 years, Sandra has 17 years experience in the field of autism. Her current post was created in November 2012, following the announcement of a £25,000 award by Michael Matheson, Scottish Minister for Public Health, as part of the Scottish Strategy for Autism: Autism Development Fund for 2012-13.
Sandra’s role is to offer advice and information to families, as well as the best advice and support for education, health and social service professionals.
“The design of this new course has taken several months, and has been done very much in conjunction with Cornerstone’s Learning and Development team,” she said.
“The aim is that it will become an invaluable tool for professionals working with people with learning difficulties, and it has three main objectives - to provide information about Fragile X Syndrome to the relevant professionals, to give them the ability to recognise its characteristics and to help Identify ways to support individuals with the syndrome, which is very important. Despite being the most common cause of inherited learning disability, Fragile X is actually a rare condition and is not widely recognised, with just one in 4,000 males affected and one in 6,000 females affected.
“The plan it to roll out the course to Cornerstone staff in the first instance, but the long-term intention is to make it available to other professionals, including teachers, as it includes an education-based section which would be very helpful for them.”
Tim Potter, Managing Director of the Fragile X Society, welcomed the new resource.
“This new e-learning course will be a huge asset in terms of being able to further educate people about Fragile X Syndrome. It is important that those working with children and young people are given the tools to identify the condition, as well as advice and guidance on how to help them and their families.
”After rolling this out in Scotland, we hope to expand to cover the whole of the UK. We are very grateful to Sandra, Cornerstone and the Scottish Government for leading the way.”