Our aim is to raise awareness of the condition and encourage more research into it.
What is Fragile X Society?
Fragile X Society is a national charity based in Essex, offering support and information to families affected by fragile X. This support includes giving information on the condition, ways to help individuals with the condition, access to disability benefits and even lending a sympathetic and listening ear at difficult times. The society also offers support and information to professionals working with sufferers and researchers in the field of fragile X.
Fragile X syndrome is the most common known cause of inherited learning disabilities. As well as learning difficulties, people with Fragile X can also display characteristics such as anxiety, gaze aversion, problems with the management of change and transition, and some autistic-like behaviours including hand flapping.
A Little Bit of History
Founded in 1990 by a group of families whose children had been diagnosed with fragile X syndrome, the society used to be run from one of the family’s homes. They then rented premises and gradually took on paid staff as the society grew. Before the Fragile X Society began, there was no specific support for families affected by the syndrome and very little was known about the condition.
I felt immediately looked after, despite not being an urgent case. Thank you.
Fragile X Society Today
The society now has 6 members of staff working hard for their cause; a Chief Executive Officer, a book keeper, a clerical assistant and three family support workers. Their aim is to raise awareness of the condition and encourage more research into it. They also aim to extend their family support services to enable them to work more directly with families.
Due to there being some long distances between the location of the society itself and some of the people they help, a lot of their support has to be given over the phone or via email. However, they do run support groups in Essex, where the society is based, and in Glasgow, where one of their family support workers is based. The society is also able to contact specialist advisors on fragile X syndrome when families have more complex queries.
And due to their small size, funding for raising awareness and expanding the society is often quite hard to come by. However, many of the families that the Fragile X Society have supported often express their gratitude by providing their own support for the society via fundraising efforts. This is a heart-warming testimony to just how much of a life-line this small but powerful charity is to the families they help.
This small society does a fantastic job in supporting families affected by Fragile X and in raising awareness of the condition.
You can help make a difference to families and children suffering from fragile X syndrome by choosing to support the charity using easyfundraising, raising donations when you shop online.