News
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Help us make a video for TOFS Awareness Week 2021!
Published: Tue, 22nd December 2020, 03:24 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 think it’s g ... [Read more] -
Season's greetings from TOFS!
Published: Tue, 22nd December 2020, 10:13 AM What a year 2020 has been. Some of you reading this will have connected with TOFS for the very first time this year; whether by seeking information and support with your new baby, attending our online Q&A sessions, reading the ... [Read more] -
OA/TOF highlighted in the first of ERNICA's animations that aims to help patients and families affected by Inherited and Congenital Anomalies
Published: Mon, 21st December 2020, 01:12 PM TOFS are delighted to see this initiative by The European Reference Networks for rare diseases - Inherited and Congenital Anomalies (ERNICA) in developing a series of animation videos which aim to provide information to patients, ... [Read more] -
TOFS involved in another big research project!
Published: Mon, 21st December 2020, 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] -
TOFS trustee Graham Slater, co-authors letter to The Lancet on the impact of a no-deal Brexit on ERNs
Published: Thu, 17th December 2020, 10:56 AM European Reference Networks (ERNs) are virtual networks of specialist hospitals across Europe that address rare and complex conditions (such as OA/TOF). TOFS Trustee, Graham Slater, who is also the ... [Read more] -
Please be aware of the dangers of button batteries this Christmas!
Published: Thu, 17th December 2020, 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] -
The TOFS recipe book is here! (a new shipment on their way to Amazon NOW)
Published: Thu, 3rd December 2020, 02:18 PM The book is packed to the brim full of easy and tasty dishes to cook for your family, whether they are on a purée diet or are coping with solid foods, there is something to suit everyone. Thank you if you ... [Read more] -
TOFS receives two HUGE grants!
Published: Thu, 3rd December 2020, 10:38 AM In order to continue to support the OA/TOF community we rely heavily on corporate grants as well as the dedication of our individual and corporate fundraisers. We are very grateful to have been in receipt of two huge grants this y ... [Read more] -
Wow, thank you for running for TOFS!
Published: Tue, 1st December 2020, 07:59 AM 2020 may not have been a ‘normal’ year but that hasn’t stopped our fantastic TOFS members from achieving their fundraising goals! This year the London Marathon and Great North Run have been virtual events, ... [Read more] -
Help to improve understanding of feeding issues experienced by those born with OA/TOF
Published: Tue, 10th November 2020, 01:41 PM What is SaFE and who is involved? SaFE is a PhD project being carried out by Alexandra Stewart, a speech and language therapist, alongside a team of researchers at Great Ormond Street Hospital and University College Londo ... [Read more] -
Useful resources for TOFS members
Published: Mon, 2nd November 2020, 03:19 PM Much has changed over the last eight months and the need to signpost hidden disabilities is becoming increasingly important, especially when it comes to the 'TOF cough'. We've teamed up with the Hidden Disabilities Sunf ... [Read more] -
Join us for the first ever (virtual) Teddy Toddle
Published: Mon, 19th October 2020, 11:05 AM Teddies aren't mandatory, and neither is toddling - just complete 5k over 5 days to get a fantastic challenger medal (for the first fifty challengers who sign up on our event page)! No matter where you are in the world, you can r ... [Read more] -
TOFS is recruiting! Volunteer and events co-ordinator
Published: Tue, 13th October 2020, 08:53 AM Applications for this position are now closed! Thank you to all who applied, we will be in touch soon. Who we are: Tracheo-Oesophageal Fistula Support (TOFS) is the UK’s only registered charity for people bor ... [Read more] -
Opportunity to take part in research into transition from paediatric to adult care. Please take part!
Published: Wed, 23rd September 2020, 09:58 AM We’re delighted to announce this research study into transitioning from paediatric to adult care in the UK. You can watch a short video about the importance of engagement with the study here. Trainee Clinical ... [Read more] -
Introducing our 2020 Virtual London Marathon runners
Published: Thu, 10th September 2020, 12:49 PM A huge thank you from TOFS to those who took part in the Virtual London Marathon, we hope you feel very proud of yourselves. We look forward to announcing how much has been raised in due course. We are delighted to announce that ... [Read more] -
Introducing our amazing 2020 Virtual Great North Run runners
Published: Mon, 7th September 2020, 11:54 AM A massive thank you to all who took part in the virtual Great North Run on Sunday 13 September. With the help of the official GNR our runners were able to recreate the experience and excitement of the real thing, from an up-beat ... [Read more] -
A few things to consider when preparing to start school in September 2020
Published: Tue, 1st September 2020, 12:32 PM With the Government announcing all pupils are to return to school full-time in September, schools are implementing a range of measures to keep pupils safe. These measures include regular hand washing, ensuring good respiratory hyg ... [Read more] -
Supporting the OA/TOF comunity with online Q&A sessions
Published: Tue, 25th August 2020, 02:33 PM June saw the start of a series of Q&A sessions, designed to support members during the turbulent times in lockdown. The TOFS annual conference is a huge event in our calendar, but regrettably we felt we h ... [Read more] -
Book now for TOFS' latest live Q&A session
Published: Thu, 20th August 2020, 03:18 PM In the latest of our online Q&A sessions we were delighted to talk to Dr Keith Lindley, Paediatric Gastroenterology Consultant at Great Ormond Street and Professor Grant Fullarton, Associate Professor of Surgery and Consultant ... [Read more] -
A HUGE thankyou to our Great North Run runners!
Published: Wed, 19th August 2020, 10:50 AM Due to Covid-19, this years’ Great North Run was a virtual event open to everyone! The race took place on Sunday 13 September with each runner starting at the same time, running a route of their choice. The official GNR app ... [Read more] -
Help us make a movie!
Published: Tue, 18th August 2020, 01:50 PM Do you or your TOF fancy starring in our new OA/TOF video 'In the words of our TOF warriors'? We all know that the real experts on OA/TOF are those who have the condition, so we'd like them to tell us in their own words what ... [Read more] -
There's still time to register for this weekend's RideLondon Challenge!
Published: Thu, 13th August 2020, 11:10 AM A huge thank you to everyone who's taken part in My Prudential RideLondon challenges, we're very grateful for the money raised for TOFS! Just because the event has passed it doesn't mean you can't still get involved an ... [Read more] -
TOFS and Research
Published: Thu, 6th August 2020, 03:20 PM 'A key plank of TOFS' strategy is to build and maintain relationships with medical professionals and researchers' The chart shown gives some idea of the sheer scale of activity in the UK and internationally, in which TOFS, ... [Read more] -
The TOF Book - Available on Amazon!
Published: Tue, 4th August 2020, 03:00 PM Great news - our highly reviewed TOF book is back in stock from Amazon! Our book "THE TOF BOOK" was published in January 2017. The book is primarily aimed at parents and carers, but also recognises and addresses some of the probl ... [Read more] -
A huge welcome to our new birthday fairy!
Published: Thu, 30th July 2020, 03:07 PM Welcome to Sara, our new Birthday Fairy! All OA/TOF children aged five and under receive a card from TOFS on their birthday, which is sent by our Birthday Fairy. This is a volunteer role and we're very excited for Sara ... [Read more] -
International OA group announces numbers of OA/TOF patients with Covid-19
Published: Thu, 23rd July 2020, 12:30 PM The International Network of Esophageal Atresia (INoEA) is a non-profit organisation for all professionals working in the field of Oesophageal Atresia (OA). It recently published a report into the number of Covi ... [Read more] -
Fantastic Q&A session on feeding and nutrition!
Published: Tue, 14th July 2020, 06:20 AM In the latest of our series of online Q&A sessions, TOF mum and Paediatric Dietitian Julia Faulkner, and Helen Marks, Speech and Language Therapist, joined us and answered a whole raft of members' questions. A huge ... [Read more] -
Don't miss this opportunity to connect with others, share experiences and support!
Published: Mon, 13th July 2020, 02:51 PM We're often told that meeting other parents is one of the most cherished benefits from attending a TOFS event. Whilst the opportunity for those face-to-face meet-ups is limited for now, we hope that our new volunteer- ... [Read more] -
TOFS 2020 AGM
Published: Tue, 23rd June 2020, 11:07 AM Due to Covid-19, this year’s Annual General Meeting took place over Zoom. Our Chairman Duncan Jackson welcomed everyone and introduced the TOFS trustees and office staff. It was explained that, although the AGM was to discus ... [Read more] -
Book NOW for online support session
Published: Mon, 22nd June 2020, 08:45 AM We're delighted to announce that, to support the OA/TOF community, we will shortly host the second of our Q&A sessions, via Zoom. The session will be free and we hope you can join us. Early booking is essential. ... [Read more] -
Volunteers' Week
Published: Fri, 5th June 2020, 10:50 AM For volunteers’ week on 01 – 07 June we took the opportunity to shine the spotlight on a few of our wonderful volunteers! Our volunteers play a huge part in helping TOFS to deliver support and information to our member ... [Read more] -
Please help us with our bid for funding
Published: Thu, 4th June 2020, 09:52 AM It will come as no surprise that TOFS' income has roughly halved during lockdown. No doubt we will be just one of many charities placing a bid for some of the emergency funding that the government has made available. Please help ... [Read more] -
OA/TOF Quality of Life Questionnaire
Published: Tue, 19th May 2020, 02:27 PM Thank you for a fabulous response! UCL GOSH received a fantastic response, following an email sent to our members, and now have 35 volunteers for the study. The initial recruitment is now closed! We will update you whe ... [Read more] -
Talk with TLCs
Published: Mon, 18th May 2020, 03:57 PM We may not be able to meet in person right now, but we're pleased to announce our support for the OA community with the first of a series of 'Talk with TLC' events! Have a look at a short video about Talk with TLCs here. Some of ... [Read more] -
TOFS Annual General Meeting
Published: Thu, 14th May 2020, 09:51 AM We would be delighted to have our Members and Associates join us for the 2020 Annual General Meeting of T.O.F.S. The AGM will be held at 1pm on Saturday 20 June 2020. Due to the current health crisis, the meeting will be held us ... [Read more] -
TOF and Trauma by Vicki Martin
Published: Tue, 5th May 2020, 01:17 PM In the Summer/Autumn 2019 edition of Chew, we published the first part of a report written by Vicki Martin sharing her experiences and research in to the psychological effects of OA/TOF on patients and their families. Here w ... [Read more] -
Giving Tuesday
Published: Tue, 21st April 2020, 01:14 PM During the Covid-19 outbreak TOFS will continue to be here to support you all. We are regularly updating the Coronavirus news page on www.tofs.org.uk, where you’ll find information and advice from some of our patrons a ... [Read more] -
EAT Covid-19 survey
Published: Mon, 20th April 2020, 01:31 PM This phase of the study has now closed. We will provide further updates when it reopens. Are you an adult TOF/parent of a TOF who has either a confirmed diagnosis or suspects they have contracted Covid-19? EAT has developed a sur ... [Read more] -
The 2.6 Challenge - Get involved and help raise money for TOFS!
Published: Fri, 17th April 2020, 02:15 PM A HUGE thanks to all who raised money for TOFS by taking part in the 2.6 Challenge! All of your fundraising efforts are greatly appreciated! Get involved and help raise money for TOFS! It’s estimated that the ... [Read more] -
Welcome to our new TLC’s!
Published: Tue, 24th March 2020, 04:43 PM Fantastic news, more TOFS’ local contacts (TLCs) to support you in your area! Our TLCs are a small group of volunteer members, all parents, with experience of caring for a TOF child on a day-to-day basis. Spread acr ... [Read more] -
Meeting the Gastroenterologists
Published: Mon, 16th March 2020, 11:57 AM As part of our efforts to raise awareness of OA/TOF where it counts most – amongst healthcare professionals who have TOFs amongst their patients – we recently went along to the BSPGHAN (British Society of Paediatric Ga ... [Read more] -
Swallowing Awareness Day!
Published: Mon, 9th March 2020, 01:06 PM It was Swallowing Awareness Day on 18 March 2020, and this was a hugely significant day for those born with OA/ TOF. Due to surgery and resulting strictures, dysphagia is an ongoing problem for many and can range from issues ... [Read more] -
Thank you for helping us make Awareness Week 2020 great!
Published: Mon, 2nd March 2020, 09:00 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 pr ... [Read more] -
Online survey shows prevalence of anxiety higher amongst Adult TOFs than the general population
Published: Thu, 27th February 2020, 10:10 AM Last year, two MSc students in the Department of Psychology at the University of Bath, Lia Clarke and Caitlin Rabone, conducted research into the psychological wellbeing of adults born with OA/TOF. They were supervised ... [Read more] -
Thank you for applying for a TOFS place in the 2020 Great North Run!
Published: Mon, 24th February 2020, 10:05 AM The application process for a TOFS place in the 2020 Great North Run, (a half-marathon) as now closed! Thank you for your applications. We will notify the successful runners soon. The event takes place on Sunday 13 Se ... [Read more] -
Crystal joins the team at TOFS!
Published: Wed, 12th February 2020, 02:55 PM The latest recruit to the TOFS team is no stranger to some members, because once again, we have recruited our new membership communications and support worker from amongst our membership! Interviews for the position we ... [Read more] -
OA/TOF information afternoon for TOFS 2020 Awareness week at GOSH!
Published: Mon, 27th January 2020, 11:59 AM Friday 28 February 1pm-5pm Thank you to all GOSH OA/TOF patients, families and carers who attended this event. In celebration of TOFS 2020 Awareness week please come along to an informal OA/TOF information afternoon at GOSH. ... [Read more] -
Celebrate Rare Disease Day with TOFS' Family Information and Support session in Sheffield!
Published: Wed, 22nd January 2020, 01:00 PM Saturday 29 February, 11am - 1pm in Church of St Columba, 503 Manchester Road, Crosspool, Sheffield, S10 5PL. Bookings now open! (Please note change of location from that previously advertised.) This year, the TOFS 2020 A ... [Read more]