News
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Coronavirus
Published: Wed, 5th August 2020, 01:20 PM We understand that many people born with OA/TOF (and families of those born with the conditions) are concerned about the fast-evolving situation caused by the coronavirus. (Please note:This page is updated regularly as new inform ... [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] -
Join the virtual RideLondon challenge and support TOFS - no lycra necessary!
Published: Thu, 23rd July 2020, 11:06 AM Are you free on 15 and 16 August? We'd love you to get on your bike (or scooter, skateboard, tandem, penny farthing, trike, unicycle) and join the free My Prudential RideLondon event that's been set up to help save the UK&rs ... [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 last night and answered a whole raft of members' questio ... [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 It’s volunteers’ week on 01 – 07 June so we’ll be taking 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 i ... [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 u ... [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] -
Introducing our amazing 2020 Great North Run runners
Published: Mon, 4th May 2020, 11:54 AM We are delighted to announce that the following people will be running the Great North Run in September for TOFS. Peter Lowe, TOF parent Marc Charnley, TOF parent. You can support Marc here Chris Prickett, TOF parent. You can ... [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's Swallowing Awareness Day on18 March 2020, and this is 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 wit ... [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 For all GOSH OA/TOF patients and families and carers In celebration of TOFS 2020 Awareness week please come along to an informal OA/TOF information afternoon at GOSH. Meet other OA/TOF families. ... [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]