News

  • Introducing our 2021 Virgin London Marathon runners, Virtual London Marathon runners and Great North Run runners

    Published: Tue, 20th July 2021, 09:50 AM ... [Read more]
  • Adult OA/ TOF: Research Round-up

    Published: Tue, 20th July 2021, 08:30 AM Too frequently, we hear the difficulties that adults born with OA/TOF face in finding knowledgeable clinicians, and some years ago, TOFS produced its first leaflet written specifically for healthcare professionals.  We are b ... [Read more]
  • Let us send The TOF Book to your GP!

    Published: Mon, 19th July 2021, 01:10 PM 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&nbs ... [Read more]
  • Read retired paediatric surgeon Richard Spicer's paper on the development of surgical treatment of oesophageal atresia and Bristol Children's Hospital

    Published: Mon, 19th July 2021, 11:42 AM Richard Spicer is a retired pediatric and neonatal surgeon. In 1992 Spicer moved to Bristol to join pioneering paediatric surgeon Helen Noblett at Bristol Children's Hospital.  Bristol treats an average of twelve babies with ... [Read more]
  • The TOF Book and Soft Food Recipe Book available for free to new members thanks to generous donation!

    Published: Mon, 12th July 2021, 12:35 PM We are happy to announce that, due to an generous donation from TOFS' member, Sarah Spice (pictured below), we are able to offer our new members who are parents of OA/TOF children a complimentary copy of The TOF Book and The ... [Read more]
  • The Teddy Toddle is back - Get involved!

    Published: Mon, 12th July 2021, 12:13 PM Last year's Teddy Toddle was hugely successful and our members helped to raise a massive £12,000 for TOFS! If you completed the event last year, you’ll receive a different medal so that you can collect them all!  ... [Read more]
  • Volunteer Event Ambassadors needed!

    Published: Thu, 8th July 2021, 10:19 AM ... [Read more]
  • Please join us in welcoming our latest member of the TOFS team!

    Published: Thu, 8th July 2021, 10:01 AM Peter Browne joins us as our Digital Communications Lead. Peter will be responsible for helping us to grow our digital presence via our website, social media and email. Peter has some experience of TOFS as his daughter Serena (14 ... [Read more]
  • Please be aware of the dangers of button batteries!

    Published: Tue, 29th June 2021, 10:00 AM Please take extra care when using button batteries as they can cause potentially life threatening injuries if swallowed. While this is dangerous to any child, the damage caused to an already compromised oesophagus could be even m ... [Read more]
  • Bookings now open to join our next online support session – Oral Aversion and Feeding Challenges

    Published: Tue, 22nd June 2021, 11:13 AM TOFS members are invited to join our next online support session, to discuss ‘Oral Aversion and Feeding Challenges’, taking place in two weeks' time on Tuesday 6 July at 8pm on Zoom.   Do you or y ... [Read more]
  • Joe C, born with OA/TOF spreads awareness!

    Published: Mon, 21st June 2021, 12:57 PM Joe, aged 8, thought it was important to teach his classmates about his experiences with OA/TOF and why it makes him special so he made a wonderful presentation to tell them all about it.  We think Joe has done a fantastic ... [Read more]
  • TOFS involved in another big research project!

    Published: Tue, 15th June 2021, 10:04 AM In 2021, the feasibility study stage of a major UK research programme – called TOAST (Treating Oesophageal Atresia to Prevent Stricture) - will get underway.  The intention is to run a “gold standard” random ... [Read more]
  • Order The TOF Book and The Soft Food Recipe Book from the TOFS office now!

    Published: Thu, 3rd June 2021, 10:29 AM You can now order the highly reviewed The TOF Book and The Soft Food Recipe Book direct from TOFS! Click here to buy your copy THE TOF BOOK was published in January 2017. The book is primarily aimed at parents and care ... [Read more]
  • Let's celebrate our wonderful volunteers!

    Published: Tue, 1st June 2021, 02:05 PM This week marks the 2021 Volunteers' Week and we'd like to show our appreciation for TOFS' volunteers who are vital to the work that we do. Did you know that TOFS is governed by our fantastic volunteer council of manage ... [Read more]
  • Take part in the Ultra Challenge for TOFS!

    Published: Thu, 27th May 2021, 11:11 AM Push Yourself FurtherGreat fundraising events in 2021Are you a regular walker and new to endurance events? Perhaps a seasoned trekker looking for testing adventures? Or even a marathon runner wanting to 'up' your distance? Whether ... [Read more]
  • Join our live Q&A session on applying for benefits for the OA/TOF community

    Published: Thu, 27th May 2021, 09:07 AM If you are applying for benefits for yourself as an Adult, or a child with OA/TOF, and want to know how to improve your application, or what you should do if the claim is unsuccessful, then book now for our upcoming online Q& ... [Read more]
  • Find out more about patient and public involvement in research, and Adult TOF Dr Wallace

    Published: Tue, 25th May 2021, 09:50 AM You may have contributed to research carried out by Adult TOF Dr Vuokko Wallace (University of Bath) and her students in the past, and we're delighted with this animation that helps explain the benefit of ... [Read more]
  • TOFS volunteer Julia Faulkner nominated for Nutrition Professional of the Year - VOTE NOW!

    Published: Thu, 20th May 2021, 11:50 AM We are very excited to announce that Paediatric Dietitian Julia Faulkner (TOF mum and member of TOFS’ Medical Advisory Group) has been shortlisted  for Paediatric Nutrition Professional of the Year in the 2021 Complete ... [Read more]
  • Coronavirus

    Published: Tue, 11th May 2021, 10:40 AM As the UK eases out of lockdown we will no longer be updating this page regularly, all information found on this page was current at the time of writing and should be only used as a guide.  For up to date information please v ... [Read more]
  • Book now for TOFS' second online support session of 2021!

    Published: Tue, 4th May 2021, 09:20 AM TOFS members are invited to join our online support session, ‘Supporting Siblings, Dads and Partners too’, taking place next week on Tuesday 11 May at 8pm. Do you sometimes worry about the impact the condition has on ... [Read more]
  • Research published which explores the psychological well-being of adults born with OA

    Published: Mon, 26th April 2021, 12:45 PM We are pleased to let you know that a research paper, titled 'A thematic analysis exploring the psychological well-being of adults born with *esophageal atresia' has been  accepted for publication to the Journal of ... [Read more]
  • TOFS receives its largest donation ever!

    Published: Thu, 22nd April 2021, 08:20 AM I am happy to be able to make a donation of £71,000 to TOFS following the death of my mother June Martin, who died at the age of 94 last July, at home.   As an only child (and an Adult&nbs ... [Read more]
  • Exciting Opportunity to join TOFS as our Digital Communications Lead!

    Published: Tue, 20th April 2021, 09:38 AM TOFS is recruiting for the new and exciting role of Digital Communications Lead. The successful candidate will be responsible for managing, developing and optimising digital communications with our stakeholders and will be instrum ... [Read more]
  • Take part in the Captain Tom 100 and help to raise funds for TOFS!

    Published: Wed, 7th April 2021, 11:02 AM Last April Captain Tom Moore set out to walk 100 laps of his garden and raised an incredible £38.9 million for the NHS Covid-19 appeal. This year, to mark what would have been his 101st birthday, the Captain Tom 100 challeng ... [Read more]
  • Applications for Guts UK/BSPGHAN research development grant now open!

    Published: Wed, 7th April 2021, 09:14 AM Guts UK are delighted to announce that Guts UK/BSPGHAN grants are now open.   Guts UK and the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) are passionate about supporting research i ... [Read more]
  • APPLY NOW for your place at the 2021 London Marathon and Virtual London Marathon!

    Published: Thu, 1st April 2021, 01:06 PM Our application process for the 2021 London Marathon is now open!  The Marathon will take place on Saturday 3 October and this year you have the opportunity to apply to run the London Marathon route or the Virtual L ... [Read more]
  • Findings so far from CARE study into genetic factors contributing to OA/TOF

    Published: Mon, 29th March 2021, 10:48 AM Researchers from the CARE for Kids EA/TEF* Study being conducted by Columbia University have had their genetic sequencing results (from 45 families who enrolled in the pilot study) published in the European Journal for Human ... [Read more]
  • Help needed to improve training and support for parents new to gastrostomy care

    Published: Thu, 25th March 2021, 01:40 PM In 2020 TOFS helped to recruit families of children who are gastrostomy fed to work with Bethan Page (Research Fellow, Experimental Psychology, University of Oxford) in order to try and improve training and support ... [Read more]
  • TOFS AGM 2021

    Published: Thu, 25th March 2021, 12:16 PM Once again, because of Covid restrictions, this year’s Annual General Meeting for TOFS took place over Zoom at the end of March.  Hon Chairman and Trustee Duncan Jackson welcomed everyone and introduced the TOFS trustee ... [Read more]
  • Wow - what an Awareness Week!

    Published: Thu, 25th March 2021, 10:41 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& ... [Read more]
  • 2021 TOFS Awareness Week: 15 – 21 March

    Published: Mon, 1st March 2021, 09:40 AM A huge Thank you for all of your support in making the 2021 Awareness week such a huge success - you've been amazing. You can expect to see a full round up very soon! This year, more than ever, we feel that it is important to inc ... [Read more]
  • Adult TOF Vuokko Wallace published by the Journal of Pediatric Nursing

    Published: Sun, 28th February 2021, 12:10 PM We’re pleased to announce that Clinical Psychologist, University of Bath (and Adult TOF), Dr Vuokko Wallace’s Manuscript titled: 'Anxiety and depression in parents of children born with esophageal atresia: an internati ... [Read more]
  • Join our upcoming online support session, ‘Sharing tips and strategies for positive Mental Health’, on Tuesday 23 February at 8pm

    Published: Thu, 4th February 2021, 11:42 AM Don’t miss this exciting opportunity to connect with others, share experiences and receive support. We’re often told that meeting other parents is one of the most cherished and valuable benefits of attending a TOFS eve ... [Read more]
  • Help us make a video for TOFS Awareness Week 2021!

    Published: Tue, 2nd February 2021, 02:00 PM     As part of the 2021 TOFS Awareness week we’d love to produce a new video featuring some children/teens/adults born with OA/TOF.  Here’s one we hope to include, sent to us by Max Merrett, we th ... [Read more]
  • Adult TOF launches research into the role of Facebook groups in supporting the TOFS community.

    Published: Mon, 1st February 2021, 10:05 AM Adult TOF, Dr Jo Meredith, who studies online communication and behaviour, along with Dr Darren Chadwick, who has researched disability and online social support, as well as publishing research on dysphagia (both from the Universi ... [Read more]
  • Your Charity Lottery - New lottery to support TOFS!

    Published: Mon, 18th January 2021, 11:10 AM Click here to play and be in with a chance to win! TOFS is delighted to have teamed up with Your Charity Lottery to give our members a chance to win one of 81 weekly prizes, whilst raising much needed funds for the charity! Wo ... [Read more]
  • TOFS Trustee Graham Slater appointed as PPV Partner to the NHS England CRG - Specialised Surgery for Children!

    Published: Thu, 14th January 2021, 01:43 PM We are pleased to announce that TOFS Trustee and Honorary Secretary Graham Slater has been appointed to the role of Patient and Public Voice (PPV) Partner on the Specialised Surgery for Children CRG Clinical Reference Group (CRG). ... [Read more]
  • New UK Rare Disease Framework Published!

    Published: Thu, 14th January 2021, 11:40 AM The Department of Health and Social Care has published the UK Rare Diseases Framework, which replaces the  previous UK Strategy for Rare Diseases published in 2013.  The UK Rare Diseases Framework outlines 4 high-level ... [Read more]
  • Call for footage for Rare Disease Day 2021 Video!

    Published: Tue, 12th January 2021, 09:14 AM Thank you for submitting your videos - we look forward to seeing if any of our TOF community appear in the final cut!   As part of Rare Disease Day 2021, Genetic Alliance UK are producing a video that aims to capture w ... [Read more]
  • It’s a New Year, and we are pleased to announce we have a new recruit to the TOFS team!

    Published: Thu, 7th January 2021, 12:09 PM Interviews for the Volunteer and Events Co-ordinator role were held at the end of last year by telephone and Zoom, and member of TOFS, Sophie Parkins, was delighted to accept the position. Sophie will be responsible for helping&n ... [Read more]
  • The impact of Brexit on people travelling to Europe with pre-existing health conditions

    Published: Mon, 4th January 2021, 01:30 PM Further to our previous guidance posted in November 2020, we are pleased to advise that the recently announced ‘Brexit deal’ accommodates ongoing reciprocal arrangements for emergency healthcare for travellers with in ... [Read more]
© 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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