News
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TOFS 2019 Conference venue announced!
Published: Thu, 20th December 2018, 11:57 AM Save the date for the 2019 TOFS Conference It will be held on Saturday, 5 October, 2019. The venue is The Centre, Birchwood Park near Warrington in the north west of England. It's within a mile of the M6-M62 junction. This venue ... [Read more] -
Successful collaboration between TOFS and EAT benefits TOF/OA patients worldwide
Published: Wed, 5th December 2018, 12:58 PM TOFS is a founder member of EAT, the European Federation of Esophageal Atresia and Tracheo-Esophageal Fistula Support Groups which welcomes associate member groups from all parts of the world. Secretary of TOFS, Graham Slate ... [Read more] -
ESPGHAN recommends regular monitoring to check for reflux in patients with TOF/OA
Published: Tue, 27th November 2018, 09:00 AM In the Spring 2017 edition of our newsletter, Chew, we published a summary of the guidelines that had been issued by ESPGHAN in late 2016, regarding the evaluation and treatment of gastrointestinal and nutritional compli ... [Read more] -
Does your 5-12 year old child have Oesophageal Atresia? Please complete our Survey
Published: Mon, 19th November 2018, 10:05 AM The TaPSOn study is now recruiting parents of 5-12 year-old children with OA/TOF. Dr Wallace at the University of Bath is particularly welcoming responses from fathers! There have been nearly 40 responses already. Thank you ... [Read more] -
Charity Christmas Cards now for sale
Published: Fri, 16th November 2018, 09:00 AM Charity Christmas Cards in aid of TOFS now for sale £8 for 20 cards and envelopes with FREE 2nd class postage in UK You can now purchase these fabulous Christmas Cards in aid of TOFS, and with delightful photos of som ... [Read more] -
Meet our London Marathon 2019 Runners
Published: Wed, 14th November 2018, 12:36 PM Lee Barnard 'I was born with TOF in 1979 at St Mary's Hospital in Greater Manchester and was operated on the day after. Since then, I've had a few health issues. I had half of my left lung removed in 1983 after choking and floo ... [Read more] -
Patients and healthcare professionals wanted for CONCORD Focus Groups
Published: Wed, 7th November 2018, 12:12 PM CONCORD (CoOrdiNated Care Of Rare Disease) is a research study which aims to investigate how care of people with rare diseases is coordinated in the UK and how patients, their families, and the health care professionals who c ... [Read more] -
Three useful cards - available NOW!
Published: Thu, 1st November 2018, 10:00 AM These useful little cards are just the thing for certain situations that many TOF/OA families and TOF Adults understand well! Request your copies from the TOFS office now, by emailing info@tofs.org.uk. Please include which ... [Read more] -
TOFS - collaborating with the PROFS - in Berlin!
Published: Wed, 31st October 2018, 09:00 AM The ERNICA Surgery and Follow-up Consensus Guidelines workshop - in consultation with TOFS and other European patient support groups - was held in Berlin last week. The workshop was attended by a number of eminent pae ... [Read more] -
TOFS engage with Medics at Conference 2018
Published: Mon, 29th October 2018, 09:58 AM Excellent meeting with Medics at TOFS Conference 2018, Coventry The recent TOFS Conference at Coventry was well attended by various healthcare professionals. Some of them took part in a lunchtime meeting of the TOFS&nb ... [Read more] -
Photo request by the Oxford Patient Safety Collaborative
Published: Wed, 24th October 2018, 01:02 PM Regular readers of Chew and those of you who attended our TOFS Conference 2018 in Coventry will know all about our mission to actively engage with medics. Some of you may have seen a poster display about current r ... [Read more] -
TOFS support a TOF's research!
Published: Mon, 22nd October 2018, 09:00 AM We are pleased to say that TOFS Trustees have recently agreed in principle that the charity should give some financial support to Dr. Vuokko Wallace, who is researching psychological impacts of TOF/OA on families in the TaPSon Pro ... [Read more] -
Exciting developments for TOFS-endorsed research project
Published: Wed, 17th October 2018, 08:00 AM ... [Read more] -
Now available to download: School Individual Healthcare Plan and Nursery Statement templates
Published: Sat, 13th October 2018, 09:00 AM Do you need help compiling a Healthcare Plan for your TOF/OA child? TOFS are very grateful to Paediatric Dietitian and TOF parent Julia Faulkner for compiling a School Individual Healthcare Plan Template and a Nursery Statement T ... [Read more] -
Time is running out to apply to run in the 2019 Virgin Money London Marathon for TOFS!
Published: Wed, 3rd October 2018, 11:22 AM Would you like to run the 2019 London Marathon for TOFS? Our application process closes in just a few days time so apply NOW! We give priority to TOFS members and their friends and relatives. Entry fee is £50. Spons ... [Read more] -
LAST FEW TICKETS for our TOFS Conference 2018: bookings CLOSE 3 Oct
Published: Mon, 1st October 2018, 11:15 AM Seven Experts from the TOF community will discuss important topics at our Conference including: post-repair ops, genetics, respiratory issues, how to get the best service via your GP, feeding your TOF child, and&nbs ... [Read more] -
TOFS family conference last weekend a HUGE success!
Published: Thu, 27th September 2018, 09:42 AM A very big thank you to our amazing speakers. One of whom was Dr Kamran Ahmed who has been a General Practitioner in the West Midlands since 2010, and is a parent of a TOF child. He has a longstanding interest in hea ... [Read more] -
Help with compiling a Healthcare Plan available at TOFS Conference 2018
Published: Tue, 18th September 2018, 12:08 PM Do you need help compiling a Healthcare Plan for your TOF/OA child? At the TOFS Conference on Saturday 13th October 2018, Paediatric Dietitian and TOF parent, Julia Faulkner, will provide delegates with a template of an individua ... [Read more] -
TOFS' Trustee Graham presented on ‘ The Need for Expert Centres for OA'
Published: Mon, 17th September 2018, 12:02 PM TOFS' Trustee Graham Slater presented on the subject of ‘The Need for Expert Centres for OA’ at an international symposium held last week in Holland, to celebrate the retirement of Prof. David van der Zee, a Consultant ... [Read more] -
TOFS helps to train Therapists
Published: Mon, 17th September 2018, 11:32 AM Bristol Royal Hospital for Children ran a two-day training course last week mainly for paediatric Speech and Language Therapists (SaLTs), all about ‘Feeding for the under ones’. Various specialists presented to the We ... [Read more] -
Congratulations to our fantastic Great North Run 2018 runners
Published: Mon, 10th September 2018, 11:16 AM Huge thanks are due to our fabulous Great North Run 2018 runners who did incredibly well training in the summer's heatwave, and all running superbly on the day. We are very grateful to them all. The day dawned bright and sunny, a ... [Read more] -
UK Healthcare Professionals known to treat Adult TOFs
Published: Mon, 3rd September 2018, 10:39 AM UK Healthcare Professionals known to treat Adult TOFs Adult TOFs can face quite a number of issues in terms of getting some expert treatment, so we have compiled a list of 'TOF-aware' medical professionals based in the UK. & ... [Read more] -
Our members The Baker Family were on Paul O'Grady's show on ITV
Published: Mon, 13th August 2018, 01:44 PM TOF family on Paul O’Grady’s Little Heroes ITV Wednesday 15 August 8pm It's the second part of this heart-warming six-part series on Wednesday, where Paul O’Grady visits Great Ormond Street Hospital to spend ti ... [Read more] -
Meet our Great North Run 2018 runners
Published: Wed, 1st August 2018, 12:40 PM We are delighted to introduce to you our runners in this year's iconic Great North Run in Newcastle upon Tyne this September. ... [Read more] -
Come and Support our Fabulous Great North Run Runners!
Published: Wed, 1st August 2018, 11:50 AM Come and support our fabulous Great North Run runners! We are very proud that we have seven amazing runners training hard for the Great North Run in Newcastle this year, all in aid of TOFS. Our sincere thanks to them all. We ... [Read more] -
TOFS attends BAPS 65th Annual International Congress 2018
Published: Wed, 25th July 2018, 12:00 PM TOFS attended the BAPS 65th Annual Congress and networked on behalf of our members TOFS' Trustees Graham Slater and Samantha Mann, along with TOFS' manager Diane Stephens, attended the BAPS 65th Annual International Congress ... [Read more] -
Thank you for a hugely successful TOF Awareness Week 2018
Published: Thu, 19th July 2018, 12:10 PM Many thanks for all your help in making TOFS Awareness Week a huge success. We are so grateful to have been able to harness the collective force of our members. Between you, you have requested an incredible 600+ Early Years Postc ... [Read more] -
TOF/OA Awareness Week, 9 -15 July, 2018
Published: Thu, 5th July 2018, 10:47 AM TOF/OA Awareness Week, 9 -15 July, 2018 We’re delighted with the enthusiasm with which our community have embraced this year's Awareness Week which started on Monday this week! Thank you very much. We are hearing wo ... [Read more] -
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Published: Sun, 1st July 2018, 12:44 PM ... [Read more] -
TOFS' Trustee Graham meets Key Influencers at ERNICA Meeting
Published: Tue, 26th June 2018, 11:23 AM TOFS' Trustee and Adult TOF Graham Slater attended an ERNICA Patient Groups' Meeting in Paris last week, continuing to raise the profile of TOF and OA on the European medical stage. Graham is extremely well qualified to do this ... [Read more] -
Three Adult TOFs speak at TOFS' 2018 Adult TOF Seminar
Published: Thu, 21st June 2018, 12:11 PM We were delighted to invite three TOF Adults who are doctors to speak at our Seminar held at Friends House, London on June 16th 2018. With their medical training and first hand knowledge of TOF/OA they offered a well-informed and ... [Read more] -
Record number of Adult TOFS attend 2018 Adult TOF Seminar
Published: Thu, 21st June 2018, 11:58 AM Record number of Adult TOFS attend 2018 Adult TOF Seminar A record number of adults born with Tracheo-Oesophageal Fistula and/or Oesophageal Atresia (‘Adult TOFs’) attended our highly regarded Adult TOF ... [Read more] -
Might Netherlands show the way in treating TOF/OA people?
Published: Thu, 21st June 2018, 10:45 AM Associate Professor Spaander, Erasmus Medical Center We were delighted to invite Associate Professor Spaander, from the Erasmus Medical Center, Rotterdam, to our Adult TOF Seminar held in London in June 2018. She gave a very inte ... [Read more] -
On the 10th June Joanne Laycock swam 1.2 miles (1.9km), Cycling 56 miles (90km) and running 13.1 miles (21km) to raise money for TOFS.
Published: Tue, 12th June 2018, 09:14 AM Joanne took on an Iron Man (or should it be Iron Lady) challenge for TOFS to recognise the support that her cousin and family hav received from TOFS. Isaac was born with TOF TO DATE SHE HAS RAISED A MAGNIFICENT ... [Read more] -
TOFS WEBSITE HAS HAD A FACELIFT
Published: Tue, 12th June 2018, 12:44 AM As you have probably noticed our website has had a facelift. Hopefully we have made it brighter and more interesting, with more pictures of real TOF people. Over the next few months we will be updating&nbs ... [Read more] -
Thank you very much to our London Marathon 2018 runners
Published: Mon, 11th June 2018, 10:10 AM PIPPA JONES - having raised over £4,500 with gift aid Pippa is a star fundraiser! Pippa said she would finish even if she had to crawl. So glad it didn't come to that. A magnificent effort. Nine-year-old TOF&n ... [Read more] -
A RECORD YEAR FOR TOFS
Published: Fri, 8th June 2018, 11:24 PM Presenting the 2017 TOFS accounts at the recent A.G.M. Treasurer John Pearce was delighted to announce that it had been a record year for our small charity. For the first time in o ... [Read more] -
We had a Ball!!!
Published: Wed, 30th May 2018, 11:56 PM ... [Read more] -
Running for TOFS in the 2018 London Marathon - Tony Crofts
Published: Sun, 18th March 2018, 08:47 PM Text TOFS18 £10 to 70070 to sponsor Tony now or visit Tony's MyDonate page 'My wife and I were sat in the NICU when we heard the news about our son Bobby and I knew we had to do something; be pro-acti ... [Read more] -
LONDON MARATHON 22nd April 2018
Published: Sun, 18th March 2018, 08:35 PM Every year TOFS has a number of places available for people willing to take part and raise funds for our TOFS Charity. We are really grateful to all who have taken up the challenge this year. Please sponso ... [Read more] -
Running for TOFS in the 2018 London Marathon - Philippa Jones
Published: Sun, 18th March 2018, 08:24 PM Text TOFS18 £10 to 70070 to sponsor Philippa now or visit Pippa's Mydonate page 'Hi. I’m Pippa from Yorkshire, mummy to my 9 year old TOF son Isaac. Isaac was born with VACTERL and has had over 20 operation ... [Read more] -
Another TOFS Winner - Neil Stevens
Published: Sun, 18th March 2018, 08:21 PM Text TOFS18 £10 to 70070 to sponsor Neil now or Neil's Virgin Money Giving page Neil Stevens 'Hi, I'm Neil Stevens from Heysham near Lancaster. I am so excited about running the London Marathon f ... [Read more] -
Running for TOFS in the 2018 London Marathon - Kevin Mayo
Published: Sun, 18th March 2018, 08:20 PM View Kevin's myDonate page Kevin is an independant runner who has kindly agreed to use his place to run for TOFS ... [Read more] -
Running for TOFS in the 2018 London Marathon - Darron Strange
Published: Sun, 18th March 2018, 08:18 PM Text TOFS18 £10 to 70070 to sponsor Tony now or visit Darron's MyDonate page 'I am Darron Strange, and I am delighted to be running the London Marathon for TOFS. My inspiration for my run is my son Jack, who ... [Read more] -
Tony Crofts
Published: Sun, 18th March 2018, 08:50 AM We are delighted to introduce to you our five brave runners in this year's iconic Great North Run in Newcastle upon Tyne. Thanks to all of them for sharing their stories with us. We hope training is going well for all of you! &nb ... [Read more]