#fragileXpedition | Wendy Bowler (Family Support Worker)

 

By now we're sure lots of you have heard about our #fragileXpedition campaign - a journey raising awareness and funds to support individuals and families with Fragile X Syndrome, as well as its associated carrier conditions, FXPOI and FXTAS.

 

Our goal is for the Fragile X community to come together, and collectively travel 8026 miles - the whole distance around the UK - whilst raising £1 per mile!

 

In support of this, we've been asking some of our staff members why they think raising awareness of Fragile X is so important, as well as how they plan to contribute miles to our very first awareness campaign. Wendy Bowler, our Family Support Worker for children answers below -

 

 

What is your role at the Fragile X Society?

I work as a Family Support Worker for The Fragile X Society. I mostly deal with the enquiries about children. The enquiries that come in are on a huge range of topics from ways of supporting and working with children affected by fragile X to benefits, the education system and housing to name but a few! It is certainly never boring. Most of the enquiries are from parents of children with fragile X, but professionals contact us as well for information on the syndrome and how they can best support any children they are involved with. Fragile X is a family of conditions so I also deal with enquiries from individuals who carry the fragile X gene. Again this can be on a variety of topics from their chances of passing fragile X  to any children to queries about health conditions that can affect carriers

 

Why is raising Fragile X awareness important to you?

Every day I speak to or get emails from families who are struggling to have their child’s needs understood or struggling to get the right support for their child. Whilst every individual is different there are characteristics that unite many individuals with fragile X. Understanding the difficulties individuals with fragile X have and how best to support them and work with them is key to their ability to make progress but most importantly key to their happiness and enjoyment of life. Raising awareness and understanding of fragile X is therefore very important to me and to all the families I support or have supported.

 

What are you doing for fragileXpedition?

I have committed to walking 100 miles by October 10th.

Click here to sign up for #fragileXpedition, or make a donation!

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