Copyright © 2018 The Fragile X Society

 

Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

Charity Registration SC047332 - The Fragile X Society Registered Charity in Scotland
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA

 

#fragileXpedition | Becky Hardiman (CEO)

 

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. Becky Hardiman, our CEO, answers below -

 

 

What is your role at the Fragile X Society?

My role as CEO involves helping to coordinate the fantastic work done by my colleagues, as well as planning future projects and raising the profile of the Fragile X Society. In a small organisation like ours, I’m involved in lots of different ways in the day-to-day running of the charity, too!

 

Why is raising Fragile X awareness important to you?

Every day at the Fragile X Society I see posts and hear enquiries come through from individuals and families living with Fragile X who are facing preventable challenges, as a result of their needs not being recognised. I passionately believe that a diagnosis of Fragile X is not just a label, but a toolkit if information that can be applied to an individual’s situation to help them get the most appropriate support possible. Sadly, though, the condition is still too often overlooked or misunderstood as an underlying cause of learning disability, autism, early menopause or neurological problems, amongst others.

 

What are you doing for fragileXpedition?

I have committed to doing 200 miles of exercise before Fragile X Awareness Day on 10th October! I will be running the 10k in Cardiff in the coming weeks and am busy squeezing runs in, as I travel around the country for work and research. All the while I am posting online about why I am taking part and telling others about Fragile X!

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