TOFS continues to go through a period of significant growth and development. Our development from a small parent support group to an internationally recognised charity has been made possible through the support of our amazing fundraisers and generous donors.
Established 40 years ago as a self-help group, we became a registered charity in 1987 and are the only UK-registered charity supporting those born with OA/TOF and associated conditions. When Covid struck, our support to the OA/TOF community became more vital than ever. We have successfully navigated the Covid-19 disruption, embracing technology to continue to provide service, support and information through the lockdowns to our community, some of whom are especially vulnerable to the impact of Covid-19.
TOFS was set up in 1982 by parents of children born with OA/TOF (some of whom are still associated with the charity). We became a registered charity in 1987.
Forty years on, we are still helping families through the challenges of bringing up a child with OA/TOF, VACTERL and associated conditions, but now, with an increased focus on support for the cohort of adults who live with the consequences of being born with OA/TOF.
TOFS has always been keen to engage with clinicians and to support relevant research. Our activity in these areas has grown greatly especially since about 2010.
We are now the world’s largest English-speaking support group for those born unable to swallow. We have members in over 60 countries, and whilst we receive no government funding we are a small charity with big aims, and are dedicated towards a world where those born with these conditions live long and healthy lives, unconstrained by the impact of being born with OA/TOF.
Our vision is for anyone born with OA/TOF to be able to live life unlimited. We are working towards a world in which those born with OA/TOF live long and healthy lives, unconstrained by the impact of being born with these conditions.
Our three-pronged strategy aims to:
Our most recent strategy review took place between July and October 2021, and identified the following aims:
We are committed to campaigning for improved quality of care for the OA/TOF community, with decreased morbidities for patients and improved outcomes.
To fulfil our aims and objectives, we will support families, adults, professionals and collaborate and campaign for change.
Having a baby born with OA/TOF can be incredibly distressing for families.
We offer emotional and practical support and information to empower families and equip them with the knowledge and skills they need to provide the best possible care for their baby and throughout their life.
We provide information at every stage of the OA/TOF journey, through things such as leaflets, information cards, a regular magazine, videos, conferences, and a substantial medical book “The TOF Book”.
Families can exchange information via our OA/TOF Support Facebook group that we facilitate and moderate, and speak to a TOFS Local Contact (TLC) volunteer for 1:1 support.
Families can attend events, virtual and face to face, and read other family stories in our magazine, Chew.
OA/TOF were once considered paediatric conditions, and it is only in recent years – with the growing cohort of adults born with these conditions – that the long-reaching implications of being born with OA/TOF are becoming more acknowledged.
Research consistently demonstrates that a repaired oesophagus and trachea do not function like an oesophagus and trachea which developed in normal continuity in utero.
Dysphagia and reflux are common, though not universal.
Many patients may not recognise these as ongoing symptoms of OA/TOF as they have never had a ‘normal’ oesophagus’ and may have been led to believe it had been surgically ‘fixed’.
We have increased our focus on support for the adult OA community and will continue to do so, particularly raising their concerns amongst clinicians.
TOFS endorses a second Facebook group specifically for adults born with OA/TOF.s
We often hear from professionals who have not previously encountered OA and TOF.
This is hardly surprising when there are over 7000 rare diseases and a general health-care professional, may, at best, only see a patient with OA/TOF a handful of times in their career.
We develop resources that will educate and inform.
A recent development is our library for health professionals, where we electronic provide access to our publications (free of charge).
This library is available for all healthcare professionals, including: Midwifes, nursing staff, GPs, obstetricians, health visitors, Speech and language therapists, dietitians, teachers and support staff.
In 2021 TOFS issued a position paper aimed at ensuring consistent lifelong multi-disciplinary care for people born with OA regardless of their age, or where they live in the UK.
We work with those organisations whose impact can be expected to make a difference to our OA/TOF community and are proud of our connections, both internationally and in the UK.
For further information please see our page on collaboration.
TOFS has become increasingly involved with various research initiatives relevant to OA/TOF. We are now the formally recognised Patient and Public Voice partner in several UK initiatives. We are also represented by EAT in international programmes such as ERNICA.
In addition, we specifically endorse several other research projects. We contribute small amounts of funding in some instances.
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TOFS receives no Government support and relies completely on donations from our supporters.
Regular donations are extremely important to TOFS. By choosing to give a regular monthly donation, you will help us to plan ahead and make long-term improvements for people with OA/TOF and associated conditions all over the world.
