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, share experiences and learn coping strategies.The session will be held via Zoom and facilitated by two of our TOFS Local Contacts (TLCs), Naomi Webborn and Cara Macdonald – both are […]
If you didn’t get chance to see Dr Charles Shaw-Smith and Dr Bryn Webb presenting their “OA/TOF and the lost twin” hypothesis at our recent “Improving Care in OA/TOF” seminar then don’t miss your chance to hear all about it and discover how you can get involved.Dr Shaw-Smith and Dr Webb will be joining us […]
Join us for our 2024 Awareness Week and help us raise awareness of OA/TOF with health professionals and the wider public.More details to follow soon. /*! elementor-pro - v3.18.0 - 20-12-2023 */ .elementor-widget-countdown .elementor-countdown-expire--message{display:none;padding:20px;text-align:center}.elementor-widget-countdown .elementor-countdown-wrapper{flex-direction:row}.elementor-widget-countdown .elementor-countdown-item{padding:20px 0;text-align:center;color:#fff}.elementor-widget-countdown .elementor-countdown-digits,.elementor-widget-countdown .elementor-countdown-label{line-height:1}.elementor-widget-countdown .elementor-countdown-digits{font-size:69px}.elementor-widget-countdown .elementor-countdown-label{font-size:19px}.elementor-widget-countdown.elementor-countdown--label-block .elementor-countdown-wrapper{display:flex;justify-content:center;margin-right:auto;margin-left:auto}.elementor-widget-countdown.elementor-countdown--label-block .elementor-countdown-digits,.elementor-widget-countdown.elementor-countdown--label-block .elementor-countdown-label{display:block}.elementor-widget-countdown.elementor-countdown--label-block .elementor-countdown-item{flex-basis:0;flex-grow:1}.elementor-widget-countdown.elementor-countdown--label-inline{text-align:center}.elementor-widget-countdown.elementor-countdown--label-inline .elementor-countdown-item{display:inline-block;padding-left:5px;padding-right:5px} Days Hours Minutes Seconds
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. Keep reading to see how you can get involved. How to get involved Light up for Rare At 7pm on the 29th Feb, show your colours and join the global chain of lights! Play this […]
Calling all adults born with OA/TOF. You’re invited for a virtual cuppa and chat with other adults born with OA/TOF. This informal meet-up is led by volunteers, who are also adults born with OA/TOF, and is a relaxed, safe space to share stories and experiences with others that understand what you are going through. So, come along, […]
Take part in our Big Splash Swimathon and help support TOFS while staying active! Choose to go it alone or get the whole family involved and set a group target.Pick your distance from our Mini splash right up to 10K or go freestyle and pick your own.Get down to your local pool, lido or brave the […]
Join Naomi, our TLC for South Wales, and her husband Darren for a virtual meet up on Monday 25th March at 8pm GMT. If you wish to attend please click here to register and receive your zoom link. /*! elementor - v3.18.0 - 20-12-2023 */.elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block}
Do you have a child born with OA/TOF with additional VACTERL anomalies? Join our next Talk with TLC session to speak to other parents, share experiences and learn coping strategies. The session will be held via Zoom and facilitated by two of our TOFS Local Contacts, Tracey Fish and Laura Bell – both are volunteers and […]
Meet other adults born with OA/TOF for a virtual cuppa and chat on the 4th April. This is an informal, safe and supportive space to meet others born with a similar condition and share or listen to experiences. This session is facilitated by TOFS' volunteers who are all adults born with OA/TOF who can signpost […]
Members and associates are invited to join us for the 2024 Annual General Meeting of T.O.F.S.The T.O.F.S. Annual General Meeting will take place on 18 April 2024 by Zoom teleconference at 7:00 pm. Invited to attend: Council of Management, TOFS office staff, all Members and AssociatesAgenda1. Registration and welcome2. Introduction by Chairman3. Apologies for absence4. Approval […]
Run the London Marathon for TOFS Latest news & updates on our 2024 London Marathon team Entry fee: £50 This fee goes towards the admin fees charged by the race organisers but will count towards your fundraising pledge. Payable to TOFS on successful application. Fundraising commitment: £1,500 This is the minimum amount (before Gift Aid) […]
Please join us for our next live webinar with Cardiothoracic Consultant Surgeon, Joel Dunning on Thursday 25th April 7-8pm.Joel will be presenting and answering questions about Chest Wall Deformities, a condition that can affect some born with OA/TOF due to repair surgery in infancy. Chest wall deformities are also part of the VACTERL Association.If you […]
TOFS' members, Kerry and Joe have arranged a Charity football match in memory of Jaxon and Ezra.Kick off 3pm. Tickets £5 for adults and £2.50 for children over 3.PLUS :* face-painting* children's entertainer* raffle*food & drinksThe match will be held at Lakeside Sports Ground, A1306 Arterial Road, Grays, Essex, RM16 6DN.The money raised will be split between […]
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. This is a follow up session from the first one held in January, but you are still welcome to join even if you did not attend the first […]
RideLondon – the world’s greatest festival of cycling returns on Sunday 26th May 2024 and you could ride for TOFS! Entry fee: £25 This fee goes towards the admin fees charged by the race organisers but will count towards your fundraising pledge. Payable to TOFS on successful application. Fundraising commitment:£500 (100 mile ride) £250 (60 […]
Don’t miss your chance to meet up with other OA/TOF parents and families in South Wales. Naomi, TOFS Local Contact (TLC) for South Wales, is organising an informal get-together in Cardiff and you are invited. When : Sunday, 26th May Where: Ronald McDonald House, Heath Park Way, Cardiff, CF14 4AY This event is being organised […]
Calling all adults born with OA/TOF. You’re invited for a virtual cuppa and chat with other adults born with OA/TOF. This informal meet-up is led by volunteers, who are also adults born with OA/TOF, and is a relaxed, safe space to share stories and experiences with others that understand what you are going through. So, come along, enjoy […]
The Teddy Toddle is back! The exciting fundraising event that challenges you to walk, run or even skip 5K for TOFS. From June 8th to 16th, we invite you and your friends and family to join us in this fun and fulfilling event that can be completed anywhere in the world. You can even make […]
Write your own piece of history in the heart of the South Downs as you chase the King from ancient coast to sweeping ridges. Entry fee: £40 (100km non-stop)£30 (50km Coastal or Castle only, ex. camping) This fee goes towards the admin fees charged by the race organisers but will count towards your fundraising pledge. […]
UPDATE: Wet Weather Plan - In case of bad weather, please meet up with Charlotte in the Pear Tree Café - just a few minutes walk from the bandstand (photo's below). Unfortunately, we've been let down by Royal Mail so there will be no TOFS banners on show but Charlotte will be there to welcome […]
Do you have a teenager born with OA/TOF and have questions about transitioning into adult care? Join our Talk with TLCs online session and meet other parents in a similar situation. It's a great opportunity to share experiences and get support. The session will be held via Zoom and hosted by two of our TLCs, […]
