Updated: Sep 10, 2019
"Back in the harsh winter of early 2018 when the “Mini Beast from the East” was preparing to send blizzards our way, the Fragile X Society team took me on as their new administrative coordinator at the Society’s office in Dunmow, Essex.
From day one I was welcomed warmly into the organisation and began learning about fragile X syndrome and the business of keeping a small charity going. From that time through until now what I have found is that there is a wonderful community of people throughout the UK and beyond who are benefitting from and giving back in equal measure to The Fragile X Society.
I had expected to be doing general office jobs the like of which I had done in administrative jobs previously but I hadn’t been expecting to have so much direct contact with so many fantastic members and supporters of the Society.
It’s been enlightening for me to have become aware of the lifelong dedication of parents to children with fragile X syndrome and the sacrifices they make and challenges they go through, and also to the incredible love and joy they and everyone get back from those children as they grow and display their unique talents and personalities. Our feedback forms alone show me how important The Fragile X Society and in particular the helpline that our Advisors run are to families and so I feel privileged to have played a supporting role in their great work.
Also I have become aware of issues such as FXTAS and FXPOI which adults are dealing with and I have been glad to see that the Society I’ve been working for has been of great help to many people living with these conditions.
That leads me on to the quite humbling amount of fundraising that I’ve witnessed during my time here. It has been a pleasure to help in a small way with facilitating fundraising efforts by individuals with and without fragile X syndrome who have taken on challenges that stretch their physical abilities to the limit in order to raise money for the Society. Equally heartwarming to have seen are the small, regular donations that come in to us from people who want to show their appreciation for what the Society has done for their families. I didn’t appreciate until I worked here just how important those gifts are in order to keep a charity like ours going.
Many of the people reading this will have had some sort of contact with me on the phone or by email and I’ve been struck by just how friendly, good humoured and generous in all kinds of ways everyone connected with the Fragile X Society is.
If there’s one single memory that sticks with me from my time here it’s speaking with a parent at one of our Family Days this year whose child had just met other children with fragile X syndrome for the first time and they were all playing together and the man said that this in itself had made the long journey they had made worthwhile.
Thank you to Becky who has been a fun, kind manager to work with, and to all the staff team past and present, who I think of as friends now. I’ve been lucky to have met most of our super directors too and I feel very happy for the next Administrative and Communications Coordinator, who will have with the rewarding job of assisting with the running and growth of the brilliant Fragile X Society."
Thank you Noel for all you have done for the Society over the past 18 months. Thanks for being such a wonderful part of the community and member of the team. We will really miss you (especially your excellent sense of humour) but wish you all the best in the future!
If you would like to join our team as Administrative and Communications Coordinator, you can find out more about the vacancy and how to apply, here.
Noel and the team taking part in the FragileXpedition fund- and awareness-raising campaign!