News

Wow - what an Awareness Week!

Published: Thu, 25th March 2021, 10:41:00 AM

2021 TOFS Awareness Week took place this year from 15 to 21 March and thank you to everyone who helped to spread the word about OA/TOF!  We timed this year’s Awareness Week to coincide with NHS Nutrition and Hydration Week and International Swallowing Awareness Day on Wednesday 17 March. 

We are absolutely delighted with our Awareness Week video, featuring those born with OA/TOF sharing their understanding of the implications of OA/TOF (regardless of their age)!  Please do take the opportunity to watch the video, and share it worldwide.  We’re incredibly grateful to all the contributors and to James and Charlotte Curryparents of Attie (born with OA/TOF), for donating their time and video-editing skills to make this incredible resource available to TOFS.   

 

This year, more than ever, it was important to increase awareness of OA/TOF and the challenges that may come with it, including the TOF cough – which is a particularly difficult side effect to manage in the current climate.  We also recognise the immense pressure that living with OA/TOF (as a parent/relative or Adult TOF) may have on mental health, and the added impact of the pandemic.  Parents have lost the support of face-to-face health services such as speech and language therapists, dietitians and doctors.  Many children and adults born with OA/TOF have long-term respiratory problems and have been shielding since March 2020, and, for many, issues like school and work are a cause for worry.  A resource we have produced is a document containing links for support services that you may find beneficial.

Awareness Week saw many of you adding the Facebook frame to your profile picture, sharing your stories and using the hashtag #mentalhealthsuportforOATOF.  Thank you to everyone who took part! 

Some of you will have been lucky enough to grab yourself a ticket to our first Virtual Spa event, kindly led by a consultant from Temple Spa.  This was a very successful fundraiser for TOFS, with 100% of the ticket sales going directly to the charity! The event raised a whopping £608 for TOFS!

We have an ongoing programme of online support events to help members of the TOFS charity, more info to follow soon.

 

TOFS is pleased to now have an additional leaflet available to our members.  The Introducing solids following repair for OA/TOF leaflet, written by paediatric dietitian (and TOF parent) Julia Faulkner, aims to give guidance to parents of young children born with OA/TOF as they navigate the early stages of feeding following initial OA/TOF repair.  We hope you will find this new resource extremely helpful, download here or complete this form to order your hard copy. 

Whilst Awareness Week may have come to an end, we’re still beating the drum about OA/TOF.  We know how important The TOF Book is to our members and we'd love every GP to have a copy.  We are happy to send out a FREE pdf version of The TOF Book to GPs, so do please contact your local GP and ask them for permission to share the book with them.  Just email us at info@tofs.org.uk to pass on their details. 

© Tracheo-Oesophageal Fistula Support
TOFS is a Registered Charity in England and Wales (327735) and a Private Company Limited By Guarantee without Share Capital, registered in England and Wales (2202260).
Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
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Our team at TOFS is working tirelessly to bring you the latest advice regarding Coronavirus. The support and advice we provide are only possible thanks to kind donations from people like you. If you're able, please consider donating now.