BEGIN:VCALENDAR VERSION:2.0 PRODID:-//TOFS | OA/TOF Support - ECPv6.15.17.1//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:TOFS | OA/TOF Support X-ORIGINAL-URL:https://tofs.org.uk X-WR-CALDESC:Events for TOFS | OA/TOF Support REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:Europe/London BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20230326T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20231029T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20240331T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20241027T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20250330T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20251026T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20260329T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20261025T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20270328T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20271031T010000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/London:20260321T103000 DTEND;TZID=Europe/London:20260321T163000 DTSTAMP:20260501T033524 CREATED:20251127T143646Z LAST-MODIFIED:20260320T212432Z UID:10000154-1774089000-1774110600@tofs.org.uk SUMMARY:TOFS 2026 Seminar DESCRIPTION:TOFS 2026 Seminar Important Update:We’ve been made aware that there is a part closure on the Piccadilly Line on Saturday. Depending on which direction you’re coming from\, please walk from Holborn Station (we believe the central line is open) or get off the train at Kings Cross/St Pancras and walk from there. \nThe TOFS seminar is being held at the Institute of Child Health (ICH)\, London on Saturday\, 21st March\, 2026. \nWhy attend\nJoin us for our in-person OA/TOF Seminar in London to hear from some of the UK’s leading specialists on the work being done to improve the care of today’s OA/TOF children and to address the long-term issues affecting adults born with the condition. \nThis is a great opportunity to meet\, make connections and share experiences with other families and adults born with OA/TOF and associated conditions. \nWho should attend?\nThis seminar is aimed at adults born with OA/TOF\, parents and carers of children born with OA/TOF and medical professionals. \nNote: Registration on the day opens at 9.30am with presentations beginning at 10.30am. \n \n CLICK HERE FOR TICKETS\n \nEvent co-sponsored by  \n \n \n \nNIHR Great Ormond Street Hospital Biomedical Research Centre \nPresentations\n \nEating\, drinking & swallowing difficulties children born with OA/TOF\nPresented by Dr Alex Stewart – Speech and Language Therapist (GOSH) \n \nExperience of parents of children born with oesophageal atresia\nPresented by Dr Vuokko Wallace – Clinical Psychologist\, University of Bath \n \nGastro issues and Eosinophilic Oesophagitis (EoE) in OA/TOF patients\nPresented by Dr Osvaldo Borrelli – Head of Clinical Service\, Consultant Paediatric Gastroenterologist (GOSH) and Honorary Senior Lecturer (UCL) \n \nRole of TOF Multi Disciplinary Team (MDT) pathway in improving care in oesophageal atresia\nPresented by Ms Dhanya Mullassery – Consultant Neonatal and Paediatric Surgeon (GOSH) and Honorary Senior Lecturer (UCL) \n \nRespiratory updates from the INoEA (International Network of Esophageal Atresia) conference and ERS (European Respiratory Society) congress\nPresented by Dr Caroline Love\, Chair of TOFS Medical Liaison & Research Subcommittee and Patient Advisory Committee member of the European Lung Foundation (ELF) \nClick here to see the full schedule \nAny Questions?\nWhen is the seminar?The seminar is on March 21st\, 2026. Registration on the day opens at 9.30am with presentations beginning at 10.30am. The seminar will close at 4.30pm. \nHow much are tickets?Tickets are free to TOFS’ Members\, Associates and Health Professionals. If you wish to join TOFS\, please sign up at – tofs.org.uk/join-tofs/ \nIs this a TOFS party?No\, this is an information seminar. \nCan I watch the seminar online?This is an in-person event only and will not be live streamed. We encourage members to attend in person to get the full benefits of the event\, listening to the speakers; interacting with the Q&A and discussion sessions; meeting TOFS volunteers and staff and chatting with other members of TOFS who will be attending. \nSome of the presentations may be recorded and posted online\, at a later date. \nCan I bring my child/children?Yes\, but you might prefer not to. Children below secondary school age are not permitted into the lecture room while presentations are being made. A separate room will be available on the day for families\, and the presentations will be relayed to a screen in that room. All children must be cared for by a responsible adult at all times. The excellent Coram’s Fields Children’s play park is just over the road from the venue. \nWill there be lunch?Yes\, a light lunch will be provided\, and seating will be available. \nWill I get a chance to speak to other families / people affected by OA/TOF?Yes\, we will have both lunch and refreshment breaks to allow you chance to chat with other attendees. \nIs there wheelchair access?We are very grateful to Great Ormond Street Hospital for providing our venue for the day. However\, this is an older building and while the venue is accessible to all\, the lecture theatre itself is accessible via stairs only. If you have any disability that may affect your access or participation in the event\, please let us know when ordering your tickets.Is there a cancellation deadline?Yes. If you can no longer attend\, please let us know via info@tofs.org.uk no later than 7 days before the seminar. This is to ensure that we only cater for the correct number of guests. \nWhere is the seminar taking place?UCL Great Ormond Street Institute of Child Health\, WC1N 1EH \nIf you have any further questions\, please contact us. \nHow to get there\nWhere is the seminar?\nThe seminar is at the Institute of Child Health (ICH)\, which is a part of University College London – but situated on the GOSH site. \nThe entrance to ICH is at 30 Guilford Street\, just north of Great Ormond Street itself. Postcode is WC1N 1 EH. \n \n \n \nTOFS 2026 Seminar Important Update:We’ve been made aware that there is a part closure on the Piccadilly Line on Saturday. Depending on which direction you’re coming from\, please walk from Holborn Station (we believe the central line is open) or get off the train at Kings Cross/St Pancras and walk from there. \nPublic transport\nThe nearest tube station to ICH / GOSH is Russell Square on the Piccadilly Line. The next closest is Holborn\, on the Central and Piccadilly lines. \nKings Cross and Euston stations are both only 0.8 miles away. \nFarringdon station (Elizabeth line and Metropolitan / Circle plus some overground commuter trains from Brighton\, Cambridge\, Huntingdon) is 0.9 miles. \nTravelling by car\nPlease note\, the venue is within both the London congestion charge zone and the  ULEZ (Ultra Low Emission) zone. \nThere is some on-street metered parking around GOSH\, including in Guilford Street itself.  Much of this becomes free after 13:30 on a Saturday.  Moreover a significant amount of residents-only parking in this area becomes derestricted (i.e. free) on a Saturday afternoon. \nThere are large underground public car parks close to GOSH at: Brunswick square (NCP) – postcode WC1N 1AF; the Imperial Hotel in Russell Square and underneath the Holiday Inn -Bloomsbury\, postcode WC1N 1HT. \nOuter London Tube stations with parking\nSeveral tube stations near the end of the network in the North and West segments of outer London are close to the M25 and to some of the motorways into London. \nUnfortunately\, most of the stations listed below are within the ULEZ zone but  outside of the London congestion charge zone. \nHillingdon (Metropolitan and Piccadilly lines). Has a car park which TfL says has 283 spaces. Postcode is UB10 9NR. This station is next to a junction on the A40 Western Avenue road\, only 5 miles from the M25 /M40 junction. Moreover\, the next station along the line (Ickenham) also has a large car park effectively providing an overflow car park. \nStanmore (Jubilee line). Has a car park which TfL says has 450 spaces. Postcode is HA7 4PD. From the A41 Edgware way\, this is a direct drive along London Road. The A41 is accessed directly from M1 junction 4\, which is only 2 miles from the station. This is also close to the main A1 road. \nCockfosters (Piccadilly line) Has a car park which TfL says has 232 spaces. Postcode is EN4 0DZ. It is a direct 3 mile drive down the A111 from the Potter’s Bar Junction (24) of the M25. \nEpping (Central line) Has a car park which Sabaparking says has 532 spaces. This station is outside the London ULEZ near to the junction of the M11 and M25. It is however not so convenient from the viewpoint of motorway junctions. Postcode is CM16 4HW. \nDebden (Central line) Has a car park which Sabaparking says has 206 spaces. It is however only half a mile along the A 1168 from M11 junction 5 and also outside London ULEZ. Postcode is IG10 3TG. \nUpminster (District line) The car park here appears to be run by NCP\, which says there are 342 spaces. Postcode is RM14 2TD. It is only 3 miles from M25 junction 29\, via a route involving the A127 toward London. However it is inside the ULEZ. This might be a good option for those coming from East Anglia. \nNearby places to eat\n\nBrunswick centre (https://maps.app.goo.gl/UwBNKmhUe9ciib1G9)  and opposite Russell Square station have a wide variety of places to eat\, including: Itsu\, Nandos\, LEON\, Pret\, Franco Manca\nLamb’s conduit street has a number of higher end restaurants.\nRedemptions roasters (Lamb’s conduit street) are great for coffee. URL:https://tofs.org.uk/event/tofs-seminar-2026/ LOCATION:UCL Great Ormond Street Institute of Child Health\, 30 Guilford Street\, London\, WC1N 1EH\, United Kingdom CATEGORIES:Adult TOF,Parents & Carers,Professional ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2020/05/tofs-logo-no-text-500x500-1.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260223 DTEND;VALUE=DATE:20260302 DTSTAMP:20260501T033524 CREATED:20251127T150925Z LAST-MODIFIED:20260213T115334Z UID:10000155-1771804800-1772409599@tofs.org.uk SUMMARY:OA/TOF Awareness Week 2026 DESCRIPTION:Save the date\nFrom the 23rd February until the 1st March we are asking all members to help us raise awareness of Oesophageal Atresia and Tracheo-Oesophageal Fistula (OA/TOF) . \nTo find out how to get involved\, please visit our dedicated Awareness Week page at: https://tofs.org.uk/oa-tof-awareness-week-2026/ URL:https://tofs.org.uk/event/oa-tof-awareness-week-2026/ LOCATION:Various locations CATEGORIES:TOFS ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2025/11/TOFS-OA-TOF-Awareness-Week-Get-Ready.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20251025 DTEND;VALUE=DATE:20251103 DTSTAMP:20260501T033524 CREATED:20250411T145009Z LAST-MODIFIED:20251031T104618Z UID:10000112-1761350400-1762127999@tofs.org.uk SUMMARY:Big Splash Swimathon 2025 DESCRIPTION:Take part in our Big Splash Swimathon and help support TOFS while staying active!  \n\nChoose to go it alone or get the whole family involved and set a group target.\nPick your distance from our Mini splash right up to 10K or go freestyle and pick your own.\nGet down to your local pool\, lido or brave the open water.\nDive in!\n\nChoose your distance!\nMini splash = 10 lengths of 25m pool\n0.5K = 20 lengths of 25m pool\n1K = 40 lengths of 25m pool\n3K  = 120 lengths of 25m pool\n5K = 200 lengths of 25m pool\nMega splash – 10K = 400 lengths of 25m pool\nFreestyle – pick your own! \nRegister your Big Splash to get your medal!\nThank you for getting involved in our Big Splash Swimathon. Please complete this form to register so we can reserve your medals. \nTo complete this registration form\, we require a link to your fundraising page. Please set this up first and return back to this form once done. \nPlease use People’s Fundraising who charge us much lower fees than some of the other fundraising platforms. Which means more of your donations will be passed to TOFS. URL:https://tofs.org.uk/event/big-splash-swimathon-2025/ LOCATION:Various locations CATEGORIES:Fundraising ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2025/04/big-splash-icon.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20251008T190000 DTEND;TZID=Europe/London:20251008T200000 DTSTAMP:20260501T033524 CREATED:20250514T143508Z LAST-MODIFIED:20250926T131336Z UID:10000117-1759950000-1759953600@tofs.org.uk SUMMARY:Live Q&A: OA/TOF related respiratory issues for adults DESCRIPTION:Are you an adult born with OA/TOF and experiencing respiratory issues\, such as chronic cough\, aspiration\, dysmotility or tracheomalacia? \nJoin us for the upcoming Q&A session with Professor Alyn Morice. \nProfessor Morice is Head of Respiratory Medicine at HYMS\, based at the University of Hull. He is also an Honorary Consultant Physician at Hull and East Yorkshire Hospitals NHS Trust. Professor Morice specialises in the diagnosis and treatment of cough and runs the Hull Cough Clinic. He also runs the Hull Respiratory Clinical Trials Unit\, specialising in the treatment of asthma and COPD. \nProfessor Morice has led the European Respiratory Society and British Thoracic Society Taskforces on Cough. \nSome members may recall Professor Morice’s previous talk on the TOF Cough. \n\nCLICK HERE TO REGISTER\n \nUsing Zoom\nIn order to join this meeting\, you will need to pre-register and follow the unique link you will receive in your email. Please don’t share the link with another user as this could block access for you. Instead\, ask them to register for their own link. \nFor the best experience\, we recommend downloading Zoom to your computer or mobile device before joining the meeting [click for more info]. \nIt is also possible to access the meeting using your web browser (e.g. Chrome\, Safari\, Edge) without downloading any plugins or software [click for info]. \nThe following video goes over the basic controls you can use while in a Zoom meeting. URL:https://tofs.org.uk/event/live-qa-oa-tof-related-respiratory-issues-for-adults/ LOCATION:Online CATEGORIES:Adult TOF ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2025/05/Oct25-NEW.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250909T200000 DTEND;TZID=Europe/London:20250909T210000 DTSTAMP:20260501T033524 CREATED:20250429T101411Z LAST-MODIFIED:20250812T153348Z UID:10000115-1757448000-1757451600@tofs.org.uk SUMMARY:OA/TOF: A father's perspective DESCRIPTION:Are you the father of a child born with OA/TOF? Are you looking to support a male caregiver? Do you wish to talk more about the father’s perspective of having a child born with OA/TOF? \nThis event is open to all members but may be particularly useful for dads and caregivers\, wishing to meet other parents in a similar situation. It’s a great opportunity to share experiences and get support. \nThe session will be held via Zoom and hosted by two of our TLCs\, Alan and Bruce\, both are volunteers and parents of children born with OA/TOF. \nAny questions / suggestions for inclusion in this discussion can be submitted prior to the event when registering on Zoom or by emailing them to info@tofs.org.uk \nPre-booking is essential\, so please register as soon as possible. \n \n CLICK HERE TO REGISTER\n \nUsing Zoom\nIn order to join this meeting\, you will need to pre-register and follow the unique link you will receive in your email. Please don’t share the link with another user as this could block access for you. Instead\, ask them to register for their own link. \nFor the best experience\, we recommend downloading Zoom to your computer or mobile device before joining the meeting [click for more info]. \nIt is also possible to access the meeting using your web browser (e.g. Chrome\, Safari\, Edge) without downloading any plugins or software [click for info]. \nThe following video goes over the basic controls you can use while in a Zoom meeting. \nhttps://www.youtube.com/watch?v=78fn4r6fhns URL:https://tofs.org.uk/event/tofs-dads-meet-up/ LOCATION:Online CATEGORIES:Parents & Carers ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2025/04/TLC-events-Sep-2025.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20250621 DTEND;VALUE=DATE:20250701 DTSTAMP:20260501T033524 CREATED:20250411T105341Z LAST-MODIFIED:20250704T095944Z UID:10000111-1750464000-1751327999@tofs.org.uk SUMMARY:Teddy Toddle 2025 DESCRIPTION:The Teddy Toddle is back and you can double your donation for free!\nToddle for the mental health of TOFS! \nThe exciting fundraising event that challenges you to walk\, run or even skip 5K for TOFS. \nThe big change this year is that we will be holding the event as part of  our Big Give campaign. This means that any money raised (and paid in between the 23rd-30th June) will be doubled at no cost to you! \n  \nFrom the 21st to the 30th of June\, and coinciding with Small Charity Week\,  we challenge you and your friends and family to get involved in this fun event that can be completed anywhere in the world. \nYou can even make it a group affair and get your whole school class involved. \nOur previous Teddy Toddles were hugely successful\, raising thousands of pounds for TOFS. With your help\, we hope to surpass our previous achievements and make an even bigger impact on the lives of those affected by OA/TOF. \nTo join\, simply register below and complete your 5K between the 21st-30th June\, breaking it down into smaller chunks if needed. \nAnd as a thank you for your efforts\, we’ll send your younger participants an exclusive TOFS Teddy Toddle medal that they can wear with pride. \nDon’t miss this opportunity to make a difference and have fun while doing it. \nSign up for the Teddy Toddle today and let’s make this year’s event our best one yet! \n \nSome of last year’s Teddy Toddlers!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nRegister your teddy toddle to get your medal!\nIMPORTANT:  \nThanks to a great response for this year’s Teddy Toddle\, our supply of medals is running very low. \nParticipants who signed up before the 25th June will receive a medal as normal.  \nHowever\, if you register after that date\, we cannot guarantee you will receive a medal. You may instead receive a certificate to print out at home. \nThank you for getting involved in this year’s Teddy Toddle. Please complete this form to register so we can reserve your medals. \nImportant note: For this year’s Teddy Toddle we request that you refer any sponsors to our Big Give campaign page (which will double their donation for free). Donations must be paid in between 23rd – 30th June to qualify. \nREGISTRATIONS CLOSED\n\nAny questions?\n What is a Teddy Toddle? \nThe Teddy Toddle is a challenge to walk\, run or even skip 5K within 5 days.  \n Why do I need to register my event? \nRegistering your event helps us to keep track of who is doing what. It also means we can allocate a medal for you to say thanks. \n When does the Teddy Toddle begin? \nThe event runs from the 8th June to the 16th June and you can complete your 5K over any 5 days in that period. \n How do I pay in my money? Do I need a fundraising page? \nNo. This year we are asking participants to pay in any money raised via our Big Give campaign here which means your money will be doubled for free! \nPlease also share this page with any friends or family that wish to sponsor you. \n What’s the Big Give? \nThe Big Give are an organisation that specialise in match funding. This means that every penny donated will be matched by a corporate partner. \nIn our case\, we have been selected by Global Radios’ Make Some Noise who will double all donations up to £5000 at no cost to you! \n What if my question hasn’t been answered? \nNo problem. If you need anything else or have any further questions\, please get in touch. URL:https://tofs.org.uk/event/teddy-toddle-2025/ LOCATION:Various locations CATEGORIES:Fundraising ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2025/04/teddy-toddle-icon.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250424T190000 DTEND;TZID=Europe/London:20250424T200000 DTSTAMP:20260501T033524 CREATED:20241126T113022Z LAST-MODIFIED:20250404T091840Z UID:10000092-1745521200-1745524800@tofs.org.uk SUMMARY:TOFS Annual General Meeting DESCRIPTION:Members and Associates are invited to join us for the Annual General Meeting of T.O.F.S. \nThe T.O.F.S. Annual General Meeting will take place on the 24th April\, 2025 by Zoom at 7:00 pm. Invited to attend: Council of Management\, TOFS office staff\, all Members and Associates \n \n Click here to register\n \nAGENDA \n1. Welcome and confirmation of quorum 2. Introduction \n3. Apologies for absence \n4. Approval of the minutes of the 2024 AGM held 18 April 2024 \n5. Annual Directors’ Report  \n6. Presentation of Accounts and Treasurer’s Report (Y/E Dec 31st\, 2024)  \n7. Appointment of Accountants   \n8(a) Election of Trustees retiring by rotation and offering themselves for re-election \n• Tamasine Swan• Kate Tyler \n8(b)  Election of new Trustee(s)  \n• To’neill Bala• Vanessa Johnson• Carole Melia \n9.  Any other business \n10. Close of Meeting \nGraham SlaterTrustee/Director & Hon. Secretary \n  \nWho can attend?\nPlease note\, all Members and Associates are welcome\, although only those with a membership status of “Member” can vote. \nTo check or amend your status\, please login to the “Update My Details” page in the Members’ Area of the TOFS website. \nPlease also note that\, per the Companies Act 2016\, those with a membership status of Member are entitled to appoint a proxy to attend and vote on their behalf at this meeting\, (Please contact the TOFS office for further details should you intend to do this). \nIf you have any questions about the AGM\, please contact us. \nUsing Zoom\nIn order to join this meeting\, you will need to pre-register and follow the unique link you will receive in your email. Please don’t share the link with another user as this could block access for you. Instead\, ask them to register for their own link. \nFor the best experience\, we recommend downloading Zoom to your computer or mobile device before joining the meeting [click for more info]. \nIt is also possible to access the meeting using your web browser (e.g. Chrome\, Safari\, Edge) without downloading any plugins or software [click for info]. URL:https://tofs.org.uk/event/tofs-annual-general-meeting/ LOCATION:Online CATEGORIES:TOFS ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2020/05/tofs-logo-no-text-500x500-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250408T200000 DTEND;TZID=Europe/London:20250408T210000 DTSTAMP:20260501T033524 CREATED:20250214T111646Z LAST-MODIFIED:20250327T084714Z UID:10000104-1744142400-1744146000@tofs.org.uk SUMMARY:Talk with TLCs: Top tips for travelling with your child born with OA/TOF DESCRIPTION:Are you planning on taking your child born with OA/TOF away on holiday? \nWhether going away in the UK or abroad\, as parents\, our TLCs Naomi and To’neill understand the worry of what to pack\, managing medications/equipment\, and what food will be available… \nSo\, join them in sharing their top tips when travelling! \n \n \n CLICK HERE TO REGISTER\n \nUsing Zoom\nIn order to join this meeting\, you will need to pre-register and follow the unique link you will receive in your email. Please don’t share the link with another user as this could block access for you. Instead\, ask them to register for their own link. \nFor the best experience\, we recommend downloading Zoom to your computer or mobile device before joining the meeting [click for more info]. \nIt is also possible to access the meeting using your web browser (e.g. Chrome\, Safari\, Edge) without downloading any plugins or software [click for info]. \nThe following video goes over the basic controls you can use while in a Zoom meeting. \nhttps://www.youtube.com/watch?v=78fn4r6fhns URL:https://tofs.org.uk/event/talk-with-tlcs-top-tips-for-travelling-with-your-child-born-with-oa-tof/ LOCATION:Online CATEGORIES:Parents & Carers,Support ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2025/02/Talk-with-TLCs-Travelling-tips.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250312T183000 DTEND;TZID=Europe/London:20250312T193000 DTSTAMP:20260501T033524 CREATED:20241212T113557Z LAST-MODIFIED:20250227T171103Z UID:10000095-1741804200-1741807800@tofs.org.uk SUMMARY:Live Q&A: Managing medications effectively DESCRIPTION:Do you have any questions or concerns around the medications you or your child may take? \nJoin Consultant Pharmacist Gastroenterologist Anja St Clair Jones\, and Lead Neonatal Pharmacist Christian Chadwick\, for this live Q&A session. \nAll adults and parents welcome! \n \nMeet the speakers\nChristian Chadwick \nChristian is the Lead Pharmacist for Neonatal Care at the Royal Sussex County Hospital in Brighton\, home to the largest and only surgical Neonatal Intensive Care Unit serving Kent\, Surrey\, and Sussex. \nIn addition to his hospital role\, Christian serves as the Pharmacy Lead for Neonatal Care across the Kent\, Surrey & Sussex region. He collaborates with pharmacists and multidisciplinary healthcare teams to optimise medicines use for newborns across 13 hospitals providing neonatal care in the area. \nChristian is also an active member of the UK Neonatal and Paediatric Pharmacy Group\, contributing to national advancements in neonatal care as part of its Neonatology Committee. \nAnja St. Clair Jones \nAnja qualified as a pharmacist in Switzerland in 1987 and has since practiced as a clinical pharmacist in the United Kingdom.  \nIn 2011 Anja completed an MSc in Advance Pharmacy Practice at University College London whilst leading the surgical team at the Brighton and Sussex University Hospitals NHS Trust. \nIn 2012 as an independent prescriber she established drug monitoring clinics for immunosuppressants used in gastroenterology and supervises the biologics infusion clinic\, optimising and managing these therapies for the local IBD population. She leads the pharmaceutical service to the multidisciplinary Sussex Operational Delivery Network (ODN) providing regional services for viral hepatitis and hepatology inpatient and outpatient care. \nIn 2016 she gained the title of Consultant Pharmacist Gastroenterology with the remit to promote pharmacy services in Gastroenterology and is a Fellow of the RPS. \nAnja is a committee member of the Gastroenterology and Hepatology Interest Group of the United Kingdom Clinical Pharmacy Association (UKCPA) and is the 2021 recipient of the prestigious UKCPA Outstanding Achievement Award. Anja was also a member of the national IBD Standards Steering group actively promoting specialised pharmacy practice until 2022. National and international publications showcase pharmaceutical care in the gastroenterology field and encourage and inspire young pharmacists to strive for excellence in pharmacy practice. \n \n CLICK HERE TO REGISTER URL:https://tofs.org.uk/event/live-qa-managing-medications-effectively/ LOCATION:Online CATEGORIES:Parents & Carers ATTACH;FMTTYPE=image/jpeg:https://tofs.org.uk/wp-content/uploads/2024/12/Chew-Adverts-6.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250301T121500 DTEND;TZID=Europe/London:20250301T163000 DTSTAMP:20260501T033524 CREATED:20241116T120046Z LAST-MODIFIED:20250225T164055Z UID:10000090-1740831300-1740846600@tofs.org.uk SUMMARY:TOFS Seminar 2025 DESCRIPTION:Quick links: \nBook your ticket \nFull schedule \nSpeaker biographies \nJoin us in Bristol to hear from some leading experts and specialists from a variety of healthcare professions\, who work with OA/TOF patients. It is also a great chance to chat with other members; meet the TOFS volunteers and staff team and meet other charities/associations representing other medical anomalies. All adults and children (over age 13 years) born with OA/TOF\, parents\, relatives\, and healthcare professional’s welcome! \nAs this is an afternoon event\, there will be tea and coffee for refreshments during the breaks\, no food will be provided. The conference sessions are not appropriate for young children under the age of 13\, and there will not be a creche. However\, we understand some members will need to bring their young children\, so we ask that you plan to have someone else attend with you\, who is able to look after them whilst you are in the sessions.  \nRegistration on the day opens at 12:15 and the presentations will begin at 12:45. \nWe look forward to seeing you there! \n \n CLICK HERE TO BOOK\n \nSchedule\n  \n\n\n\n\n12.15  \n  \n\n\nArrival & registration  \n\n\n\n\n12:45   \n  \n\n\nWelcome  \n\n\n\n\n12:50   \n  \n\n\nTOFSDiane Stephens\, TOFS CEO  \n  \n\n\n\n\n13:00   \n  \n\n\nThe Lost Twin HypothesisDr Charles Shaw-Smith\, Consultant in Clinical Genetics\, Royal Devon University Hospital.  \n\n\n\n\n13:25   \n  \n\n\nOA/TOF: from birth to 5 years & Surgical-PEARL project updateMiss Clare Skerritt\, Paediatric Consultant Surgeon\, Bristol Royal Hospital for Children & Emma Griffiths\, Doctor & PhD student\, University of Bristol. \n\n\n\n\n13:55   \n  \n\n\nRefreshments & chat  \n\n\n\n\n15:00  \n  \n\n\nAdvancement in the instrumental assessment of swallowing in paediatrics Helen Marks\, Lead Speech & Language Therapist\, Bristol Royal Hospital for Children.  \n\n\n\n\n15:30  \n\n\nPersonal experience of OA/TOF transition & Southwest NHS approach Carole Melia\, OA/TOF parent & Transition Lead\,  Somerset NHS Foundation Trust. \n\n\n\n\n15:55  \n  \n\n\nDiscussion session Facilitated by TOFS Vice Chairman\, Duncan Jackson \n\n\n\n\n16:25 \n  \n\n\nFinal remarks & close  \n\n\n\n\nSpeaker biographies  \n \nDr Charles Shaw-Smith\nDr Charles Shaw-Smith is a Consultant in Clinical Genetics at Royal Devon University Hospital.  He was\, from 2006 to 2010\, a Wellcome Trust Intermediate Clinical Fellow\, based at the Sanger Institute and Department of Clinical Genetics at Addenbrooke’s Hospital in Cambridge. This four-year award enabled him to focus attention on his main research interests of genetic factors in oesophageal atresia and the VACTERL association. Since 2010 Charles has been based at the Royal Devon University Hospital and Peninsula Medical School in Exeter\, where he continues to have a clinical interest in oesophageal atresia and related malformations\, and is currently working on the ‘Lost Twin’ study to try to improve understanding of the causes of OA/TOF. \n \nMiss Clare Skerritt\nClare is a Paediatric Consultant Surgeon at Bristol Royal Hospital for Children. She has also contributed to a range of research projects including the Surgical-PEARL protocol\, a multicentre study exploring aetiology management and outcomes for patients with congenital anomalies potentially requiring surgical intervention. \n \nEmma Griffiths\nEmma qualified from the University of Bristol in 2017 and has worked as a doctor in both the UK and New Zealand. She specialises in Obstetrics and Gynecology and is currently undertaking a PhD in Fetal Medicine looking into improving diagnosis and care for babies with congenital anomalies that require surgery after birth. In her spare time she loves cooking and taking her husband on adventurous holidays!  \n \nHelen Marks\nHelen is the Lead Speech and Language Therapist at Bristol Children’s University Hospital. Helen has been working for almost 20 years with OA/TOF patients in Bristol and with the TOFS charity to try and raise the awareness of the role of speech and language therapists in their feeding and swallowing journeys. \nShe is particularly interested in supporting SALTs in the community\, who may not see as many of these patients as they do in a regional hospital. \nHelen’s specific clinical interest is with OA/TOF patients with associated upper airway problems such as vocal cord palsy and tracheomalacia. Along with her SALT\, nursing and surgical colleagues on the NICU\, they have successfully introduced Sham feeding for some of our long gap babies\, using a replogle tube and we are very proud to be the first unit in the UK to do this with a breast-feeding baby. \n \nCarole Melia\nCarole is the Transition Lead at Somerset NHS Foundation Trust and was a volunteer family support worker at Bristol Children’s hospital. Before this role she was a college lecturer and senior manager for 40 years including student support and received a postgraduate diploma in health promotion. Carole has also been a TOFS member for many years\, being a parent to her 36-year-old daughter\, Hannah\, born with OA/TOF. She continues to advocate on behalf of her daughter and other OA/TOF adults to improve transition for patients and receive the right care they need.   \nHow to get there:   \nThe seminar will be held at St Michaels Centre\, The Green\, Stoke Gifford\, Bristol\, BS34 8PD. \nIt is also only a 3-minute walk or 2-minute drive from Bristol Parkway\, with good train services from (amongst others) Manchester\, Liverpool\, Birmingham\, London\, and Glasgow. \nBristol Airport is a 30-minute drive away from St Michaels Centre. \nThis is very close to the M4/M32 junction. There is on-street parking on North Road\, The Green and other surrounding roads. Some on-street parking may have restrictions so please note these before leaving your car. Next door\, Bristol Parkway Station has a large multi-story car park that is open for all\, only a 3-minute walk away from the Centre. This is by far the easiest and best parking option. \nDo have a look at the map below for accessible parking spaces at St Michael’s\, and their website for further information how to get there. \n \n \nNearby places to eat: \nSt Michael’s Centre has The Coffee Shop on site\, a great place to grab some lunch ahead of the event. They are open on Saturdays 10am-2pm.   \nAdditional places include: \n\nThe Beaufort Arms\, Stoke Gifford\nAbbeywood Retail Park\, Stoke Gifford\nWinter Stream Farm\, Hambrook\nThe Fox Den\, Stoke Gifford\nThe Gifford Beefeater\n\nNearby places to stay: \nAccommodation in the local area includes: \n\nThe Village Hotel\, Bristol\nHoliday Inn Express\, Filton\nTravelodge\, Filton\, Bristol\nDouble Tree by Hilton\, Bradley Stoke\nAztec West Hotel & Spa\, Almondsbury\n\nAny Questions \nHow much are tickets?  \nTickets are free to TOFS’ Members\, Associates and Health Professionals. If you wish to join TOFS\, please sign up at – https://tofs.org.uk/join-tofs/   \nThough there is no charge to members\, the event has a cost to TOFS\, so please let the office know if you book and then can’t attend.   \nWhere can I book my tickets? \nYou can book your tickets at: https://buytickets.at/tofs/1435152/r/TOFS \nIs there a cancellation deadline?  \nYes. If you can no longer attend\, please let us know via info@tofs.org.uk no later than 3 days before the seminar.    \nCan I watch the seminar online?   \nThis is an in-person event only and will not be live streamed. We encourage members to attend in person to get the full benefits of the event\, listening to the speakers; interacting with the Q&A and discussion sessions; meeting other organisation representatives and TOFS volunteers; and chatting with other members of TOFS who will be attending.   \nSome of the presentations may be recorded and posted online at a later date.     \nIs this a TOFS party?  \nNo\, this is an information seminar.   \nCan I bring my child/children?  \nYou may prefer not to as we kindly ask only children over the age of 13 years to attend. The conference sessions are not appropriate for children and there will not be a creche. Parents/ guardians are responsible at all times for their children/teens. \nWill there be lunch?  \nNo\, but there will be tea\, coffee and biscuits available during the refreshment breaks. You may also bring small snacks with you to the venue. \nWill I get a chance to speak to other families / people affected by OA/TOF?  \nYes\, we will have an extended refreshment break to allow you a chance to chat with other members\, talk to representatives of other organisations\, and TOFS volunteers.  \nIs there wheelchair access?  \nEach room at St Michael’s Centre is accessible through using lifts and ramps. Doors and corridors are wide enough for standard wheelchairs. If you have any disability that may affect your access or participation in the event\, please let us know when ordering your tickets.  \nIf you have any further questions\, please send them to us at info@tofs.org.uk  URL:https://tofs.org.uk/event/tofs-seminar-2025/ LOCATION:St Michaels Centre\,\, The Green\, Stoke Gifford\, Bristol\, BS34 8PD\, United Kingdom CATEGORIES:Adult TOF,Parents & Carers,Professional,Support ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2024/08/tofs-logo-tiny-1.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20250224 DTEND;VALUE=DATE:20250303 DTSTAMP:20260501T033524 CREATED:20250117T102455Z LAST-MODIFIED:20250224T093510Z UID:10000102-1740355200-1740959999@tofs.org.uk SUMMARY:OA/TOF Awareness Week 2025 DESCRIPTION:Join us for our 2025 Awareness Week and help us raise awareness of OA/TOF with health professionals and the wider public. \nClick here to find out more and get involved. URL:https://tofs.org.uk/event/tofs-awareness-week-2025/ LOCATION:Various locations ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2025/01/Awareness-Week-2025-get-ready-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250213T200000 DTEND;TZID=Europe/London:20250213T210000 DTSTAMP:20260501T033524 CREATED:20241218T094525Z LAST-MODIFIED:20241218T094816Z UID:10000100-1739476800-1739480400@tofs.org.uk SUMMARY:Starting Nursery\, Pre-school\, and School - Talk with TLCs DESCRIPTION:Do you have a child born with OA/TOF starting nursery\, preschool or school soon? Join our Talk with TLCs session to speak to other parents and share experiences.  \nThe session will be held via Zoom and hosted by two of our TOFS Local Contacts (TLCs)\, Naomi Webborn and Cara Macdonald – both are volunteers and parents of children born with OA/TOF. \nThe session is free of charge to members of TOFS. \nPre-booking is essential. \nQuestions can be submitted prior to the event by emailing them in to info@tofs.org.uk \n \n CLICK HERE TO REGISTER\n \n\n\nUsing Zoom\nIn order to join this meeting\, you will need to pre-register and follow the unique link you will receive in your email. Please don’t share the link with another user as this could block access for you. Instead\, ask them to register for their own link. \nFor the best experience\, we recommend downloading Zoom to your computer or mobile device before joining the meeting [click for more info]. \nIt is also possible to access the meeting using your web browser (e.g. Chrome\, Safari\, Edge) without downloading any plugins or software [click for info]. \nThe following video goes over the basic controls you can use while in a Zoom meeting. \nhttps://www.youtube.com/watch?v=78fn4r6fhns URL:https://tofs.org.uk/event/starting-nursery-pre-school-and-school-talk-with-tlcs-2/ LOCATION:Online CATEGORIES:Parents & Carers ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2024/12/Feb25-School-Talk-with-TLCs.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20250129T190000 DTEND;TZID=Europe/London:20250129T200000 DTSTAMP:20260501T033524 CREATED:20241211T143050Z LAST-MODIFIED:20241212T172302Z UID:10000094-1738177200-1738180800@tofs.org.uk SUMMARY:Live Q&A: Long term OA/TOF related gastro issues DESCRIPTION:Are you an adult born with OA/TOF experiencing gastro related issues then please join us for our next live Q&A webinar with Professor Nick Maynard. \nProfessor Maynard is a leading consultant upper GI surgeon based in Oxford\, with over twenty-five years of experience in his field. \nAs one of the leading upper GI surgeons in the country\, Professor Maynard is particularly experienced in upper gastrointestinal laparoscopy and endoscopy procedures. He is also an expert in treating adults who have had treatment for oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF). \nProfessor Maynard has been Consultant Upper GI surgeon at Oxford University Hospitals NHS Foundation Trust since 1997. He has been the Director for Cancer Services for Oxford University Hospitals from 2017 to 2022\, and Associate Professor of Surgery at Oxford University. \nIf you wish to attend\, please click here to book your place. \n\nCLICK HERE TO BOOK\n\n\n \n\n\nUsing Zoom\nIn order to join this meeting\, you will need to pre-register and follow the unique link you will receive in your email. Please don’t share the link with another user as this could block access for you. Instead\, ask them to register for their own link. \nFor the best experience\, we recommend downloading Zoom to your computer or mobile device before joining the meeting [click for more info]. \nIt is also possible to access the meeting using your web browser (e.g. Chrome\, Safari\, Edge) without downloading any plugins or software [click for info]. URL:https://tofs.org.uk/event/live-qa-long-term-oa-tof-related-gastro-issues/ LOCATION:Online CATEGORIES:Adult TOF ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2024/12/Chew-Adverts2.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20241116T123000 DTEND;TZID=Europe/London:20241116T170000 DTSTAMP:20260501T033524 CREATED:20240502T082238Z LAST-MODIFIED:20241003T075639Z UID:10000067-1731760200-1731776400@tofs.org.uk SUMMARY:TOFS Seminar 2024 DESCRIPTION:Click here to see the full Seminar schedule and to meet the speakers. \nJoin us in Warrington to hear from some leading experts and specialists from a variety of healthcare professions\, who work with OA/TOF patients. It is also a great chance to chat with other members; meet the TOFS volunteers and staff team and meet other charities/associations representing other medical anomalies. All adults and children (over age 13 years) born with OA/TOF\, parents\, relatives\, and healthcare professional’s welcome! \nAs this is an afternoon event\, there will be tea and coffee for refreshments during the breaks\, no food will be provided. There will also be no creche provided and the environment is not appropriate for small children. Parents / guardians will be responsible at all times for any children present. \nWe look forward to seeing you there! \n \n CLICK HERE TO BOOK\n \nConfirmed speakers and topics include:  \nRebecca Thursfield – Paediatric Respiratory Consultant at Alder Hey Hospital\, presenting on current day to day clinical practice around ongoing respiratory management for those born with OA/TOF.  \nChantal Ten Kate – Postdoc researcher at Erasmus University Medical Center\, joining us all the way from Rotterdam\, Netherlands to discuss their world-leading Adult Care for OA/TOF patients.  \nNick Lansdale – Paediatric Consultant and Neonatal Surgeon at Royal Manchester Children’s Hospital\, presenting on ongoing issues/ complications of those born with OA/TOF\, GI complications and things to look out for.   \nKeep an eye out for more to come!  \n \n CLICK HERE TO BOOK\n \nHow to get there:   \nThe seminar will be held at The Engine Rooms at Birchwood Park\, Warrington\, WA3 6YN.   \nSome of you may recognise the space as this was the brilliant venue which hosted our TOFS conference in 2019\, at which we had 140 members attend!  \nThis is very close to the M6/M62 junction. There are good train services to Warrington from (amongst others) Manchester\, Liverpool\, Birmingham\, London\, and Glasgow. The nearest airport to the venue is Manchester. \nPlease click here to see the information from the venue on how to visit by public transport or by car.  \nNearby places to stay & eat: \nThe B&B Hotel (formerly the Penta Hotel)\, also located in the Birchwood Park\, is only a 10-minute walk from the venue.  \nThe hotel is open to non-residents for food but we recommend giving them a call prior to arrival. \nFind out more at: \nB&B Hotel\, Warrington  \nIf you wanted to venture a bit further\, Culcheth is only 2.5 miles away from the venue\, by car or taxi\, where there are a number of lovely pubs\, bars and restaurant’s  \nAny Questions \nHow much are tickets?  \nTickets are free to TOFS’ Members\, Associates and Health Professionals. If you wish to join TOFS\, please sign up at – https://tofs.org.uk/join-tofs/   \nThough there is no charge to members\, the event has a cost to TOFS\, so please let the office know if you book and then can’t attend.   \nIs there a cancellation deadline?  \nYes. If you can no longer attend\, please let us know via info@tofs.org.uk no later than 3 days before the seminar.    \nCan I watch the seminar online?   \nThis is an in-person event only and will not be live streamed. We encourage members to attend in person to get the full benefits of the event\, listening to the speakers; interacting with the Q&A and discussion sessions; meeting other organisation representatives and TOFS volunteers; and chatting with other members of TOFS who will be attending.   \nSome of the presentations may be recorded and posted online at a later date.     \nIs this a TOFS party?  \nNo\, this is an information seminar.   \nCan I bring my child/children?  \nYou may prefer not to as we kindly ask only children over the age of 13 years to attend. The conference sessions are not appropriate for children and there will not be a creche. Parents/ guardians are responsible at all times for their children/teens. \nWill there be lunch?  \nNo\, but there will be tea\, coffee and biscuits available during the refreshment breaks. You may also bring small snacks with you to the venue. \nWill I get a chance to speak to other families / people affected by OA/TOF?  \nYes\, we will have an extended refreshment break to allow you a chance to chat with other members\, talk to representatives of other organisations\, and TOFS volunteers.  \nIs there wheelchair access?  \nThe building is accessible to all\, the event will be held on the first floor which is accessible via both lifts and stairs. The first floor is on one level\, apart from steps into the auditorium which has a chair lift. Within the auditorium there is a platform for wheelchairs.   \nIf you have any disability that may affect your access or participation in the event\, please let us know when ordering your tickets.  \nIf you have any further questions\, please send them to us at info@tofs.org.uk  URL:https://tofs.org.uk/event/adult-family-information-seminar/ LOCATION:EngineRooms\, Birchwood Park\, Warrington\, Cheshire\, WA3 6YN\, United Kingdom ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2020/05/tofs-logo-no-text-500x500-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20241024T190000 DTEND;TZID=Europe/London:20241024T200000 DTSTAMP:20260501T033524 CREATED:20240920T161219Z LAST-MODIFIED:20240920T161303Z UID:10000084-1729796400-1729800000@tofs.org.uk SUMMARY:Live Q&A: Feeding experiences and oral aversion DESCRIPTION:Please join us for our next live Q&A on issues with feeding experiences and oral aversion for those born with OA/TOF. \nFor this session\, we will be joined by Maya Asir. \nMaya is the lead for the inpatient Speech and Language Therapy service at Evelina London Children’s Hospital. She has been a paediatric Speech and Language Therapist for 18 years\, and is also a Lactation Consultant. She specialises in complex infant feeding and dysphagia in neonatology. \nMaya has worked with families with children born with OA/TOF and is passionate about their feeding journeys and optimising their future outcomes and relationship with eating and drinking. \n \n CLICK HERE TO BOOK URL:https://tofs.org.uk/event/live-qa-feeding-experiences-and-oral-aversion/ LOCATION:Online CATEGORIES:Adult TOF,Parents & Carers ATTACH;FMTTYPE=image/png:https://tofs.org.uk/wp-content/uploads/2024/09/Event-Pin-Feeding-Experiences-and-Oral-Aversion.png END:VEVENT END:VCALENDAR