News

Thank you for helping us make Awareness Week 2020 great!

Published: Mon, 2nd March 2020, 09:00:00 AM

As you will be aware, the TOFS 2020 Awareness Week ran from 24th February - 1st March, and what a week it was!  We are truly amazed by all of your efforts in spreading the word about OA and TOF to the community and medical professionals.  

 

It's been a very busy week for us in the TOFS office, with over 300 wristbands, 70 bibs, 187 leaflets and a host of other literature being sent out to our members, as well as almost 200 copies of our brand new leaflet being sent to local hospitals and OA/TOF centres across the UK.  TOFS awareness week saw incredible success on social media with many of you sharing your personal OA/TOF journeys on your timelines, using the Facebook frame and using #lifelongfollowupforOATOF and #TOFSawareness2020 whenever you posted anything to Facebook, Twitter or Instagram,  All of this will have contributed to more people being aware of OA and TOF.  Many of you asked for posters and leaflets to deliver to your local GP, as well as contacting MPs and hosting information and coffee events in your local area.

To tie in with this year's Rare Disease Day we held a hugely successful awareness event in Sheffield on Saturday 29th February.  We were delighted to welcome guest speaker Consultant Paediatric Surgeon (and TOFS' Patron) Sean Marvin, who provided invaluable information about Oesophageal Dysmotility and reflux and was on hand to answer members' questions about their TOF's specific set of needs.  Speech and Language Therapist Jane Shaw was also in attendance to advise on weaning and swallowing issues.  As well as being hugely informative, the event was also a great opportunity for OA/TOF families to get together and share their experiences with one another.

We'd also like to say a huge thank you to Great Ormond Street Hospital, who made OA/TOF their focus for Rare Disease Day and hosted their own event for GOSH patients.

All of this help has been invaluable, thank you from TOFS for your ongoing support.

We will have a full write up in the next issue of Chew, if you're not a member you can join today but clicking the link on the home page.

Thank you for sharing your photos of your wonderful TOFs.  Here's a small selection, view it in more detail here, and view the image of the younger TOFs in more detail here.

© 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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