News

  • Face-to-face in Essex (via TOFS Facebook group)!

    Published: Mon, 8th July 2019, 11:58 AM Six TOF families had a lovely time recently at an ‘unofficial’ get-together organised by Anna Hallett, mum to Archie, born with TOF.   Anna says: “We had a lovely meet-up on Sunday 30th June at Woody&r ... [Read more]
  • Introducing our amazing Great North Run runners

    Published: Thu, 30th May 2019, 11:11 AM We are delighted to announce that the following people will be running the Great North Run in September for TOFS.   Natasha Birkett, TOF relative; James Durrant, TOF grandparent; (story and photo to follow) Bre ... [Read more]
  • Book now for the 2019 TOFS Conference!

    Published: Wed, 29th May 2019, 04:43 PM Bookings are now open for the 2019 TOFS Conference.  Only £22 per person (incl refreshments and lunch). Full information and booking available here NOW!  When: Saturday 5th October 2019 Where: The EngineRooms a ... [Read more]
  • Adult TOFs - Take part in this important survey into the psychological impact of TOF/OA in adulthood

    Published: Thu, 16th May 2019, 01:53 PM Are you an Adult TOF - or the parent of an Adult TOF? Postgraduate psychology students, Lia Clarke and Cailin Rabone, from the University of Bath would like to invite you to take part in an online survey exploring the wellbeing o ... [Read more]
  • Wow! All eight runners successfully complete the Marathon for Team TOFS!

    Published: Mon, 29th April 2019, 09:30 AM A HUGE thank you! We are very proud to report that all eight of our runners safely completed the London Marathon yesterday.  Some photos here and details of their fundraising to follow.  In the meantime, a huge thank yo ... [Read more]
  • Calling Adult TOFS - which subjects shall we discuss at 2019 Conference?

    Published: Thu, 11th April 2019, 02:10 PM Plans are afoot for the TOFS 2019 Conference on Saturday 5 October.  We hope to open for bookings soon.  We'd like to make it an event that's really useful for Adult TOFs, families and carers.  Can you help? In add ... [Read more]
  • AGM 2019 AND CHILDREN'S PARTY, WARWICK, 23 MARCH 2019

    Published: Tue, 9th April 2019, 11:34 AM Our Chairman, Duncan Jackson, welcomed everyone and thanked everyone for coming. After summarising what TOFS has been up to over the last year, our Treasurer John Pearce summarised the key points of the Annual Accounts from 2 ... [Read more]
  • Research developments on the psychological impact of OA/TOF across the lifespan

    Published: Tue, 26th March 2019, 08:55 AM My name is Dr Vuokko Wallace, I’m an Adult OA/TOF and a clinical psychologist working with children and families.  I’m conducting research on the psychological impact of OA/TOF on families. Many thanks to those of ... [Read more]
  • Would you like to contribute to a research project into the cause of TOF/OA?

    Published: Mon, 25th March 2019, 10:26 AM The CARE Study (Congenital Anomalies Research Exploration) Columbia University Medical Centre in New York are looking for more participants for a new research study that will examine the genetic causes of TOF/OA.  The r ... [Read more]
  • End of Year Results of Specialist Healthcare Survey for Children

    Published: Wed, 6th March 2019, 10:20 AM Results of 'Specialist Healthcare Survey for Children' Thank you kindly to everyone who took the time to respond to our request back in April to complete a WellChild and University of Oxford survey about providing 'specialis ... [Read more]
  • Prestigious invitation to GOSH Biomedical Research Centre Showcase for TOFS Trustee Graham Slater

    Published: Mon, 4th March 2019, 10:21 AM We are delighted that our Trustee Graham Slater has received an invitation on behalf of TOFS to attend the NIHR Great Ormond Street Hospital Biomedical Research Centre Showcase event. The NIHR is the National Institute f ... [Read more]
  • Research project investigating feeding and swallowing with TOF/OA

    Published: Sat, 2nd March 2019, 10:10 AM Research project investigating feeding and swallowing in TOF/OA Alex Stewart, a Speech and Language Therapist at Great Ormond Street Hospital, has secured funding from the National Institute of Health Research to conduct a 5 ... [Read more]
  • Bigthinkers raise BIG amount for TOFS!

    Published: Fri, 1st March 2019, 03:30 PM Bigthinkers marketing studio in Notts threw their doors open last week to fundraise for TOFS. Delicious coffee and cake was on offer - in aid of TOFS - because one of their employees is the dad to a TOF.  Graphic Design ... [Read more]
  • TOFS and Research

    Published: Fri, 1st March 2019, 09:07 AM 'Behind the scenes – cooperating with researchers' by TOFS Trustee Graham Slater, reprinted from CHEW Summer 2018   It may surprise you but OA is a relatively high priority for medical researchers across the world. Qu ... [Read more]
  • Rare Disease Day, 28 February 2019

    Published: Thu, 28th February 2019, 09:00 AM Rare Disease Day 28 February 2019   We are delighted to support Rare Disease Day (28 February 2019). Thank you so much to everyone who has shared our Rare Disease Day images on social media. There is still time to ... [Read more]
  • LAST CHANCE to take part in important survey re TOF/OA and a 'lost twin'

    Published: Wed, 27th February 2019, 12:16 PM OUR SURVEY CLOSED THURSDAY 28 FEBRUARY TOFS invited parents who have had children born with TOF/OA to take part in this very short preliminary survey to better understand the possible link between these conditions and a ‘lo ... [Read more]
  • Congratulations to Harriet, an Ouch! Award Hero

    Published: Mon, 4th February 2019, 11:50 AM Congratulations to Harriet, age 10! Dr Chris and Dr Xand, from the hit children's BBC TV show Operation Ouch!, explore the ins and outs of the human body using experiments. Our member, Harriet, who didn't eat until she was n ... [Read more]
  • Successful meeting of TOF families

    Published: Fri, 4th January 2019, 09:18 AM On Saturday 1st December, five TOF families from the south east of England met up at a pub near Bluewater, Kent. The gathering was organised using the TOFS' Facebook group and although it took a little planning, everything came to ... [Read more]
  • TOFS' 2019 AGM and Children's Party on Saturday 23 March

    Published: Tue, 1st January 2019, 10:40 AM Bookings are now closed. Thank you to everybody who has booked and we look forward to seeing you there!   INVITATION TO OUR 2019 AGM AND CHILDREN'S PARTY We are delighted to invite all our Members and Associates to our for ... [Read more]
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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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