Published: Tue, 23rd June 2020, 11:07:00 AM
Hon. Chair Duncan Jackson

Due to Covid-19, this year’s Annual General Meeting took place over Zoom. Our Chairman Duncan Jackson welcomed everyone and introduced the TOFS trustees and office staff. It was explained that, although the AGM was to discuss the calendar year 2019, the current health crisis is having a great impact on 2020 and has seen the cancellation of many events in the TOFS calendar (such as the 2020 conference). TOFS has adapted its schedule of events and with the help of leading health professionals such as Prof De Coppi, Prof Morice and our volunteer TLCs we are able to support our membership and provide information through online events.

TOFS' CEO Diane Stephens

The minutes from the 2019 AGM were approved and the highlights of 2019 were discussed, such as the appointing of Diane Stephens as CEO. In 2019 TOFS had 306 new members, a successful family conference and continued sales of the TOF book as well as fantastic fundraising achievements in the London Marathon and Great North Run etc.

The TOFS strategy over the last year has been to increase pastoral support to families and Adult TOFS, raise engagement with relevant UK healthcare professional bodies and reduce excessive dependence of TOFS on its trustees. They are pleased to have appointed Event and Volunteer Co-ordinator Anna Clark and Membership Communications and Support Worker Crystal Brook in December 2019 and February 2020 respectively.

TOFS CEO, Diane Stephens, discussed membership trends over the past three calendar years and demonstrated an upward trend in membership year on year. In 2019 the new members to join TOFS were classified as follows: parent/carers 71%, Adult TOFs 12%, relatives 11%, healthcare professionals 5% and 1% expectant parents.

New Facebook group members year-on-year

The TOFS’ closed Facebook group plays an increasingly key role in pastoral support, seeing 450 new members. Information and resources were distributed, and new OA/TOF animation was added to the website along with conference videos. In 2020, the dedicated Coronavirus information page on the website recorded over 7500 views since March.

The 2019 conference was hugely successful, with 140+ attendees. It was noted that we are rolling out a series of e-events in absence of a 2020 conference but are working towards our next conference, to be held in High Wycombe on 16 October 2021.

Hon. Secretary Graham Slater




Hon. Secretary Graham Slater discussed how we continue to engage with healthcare professionals, through direct contact with hospitals, the TOFS Medical Advisory Group (MAG), attending conferences of professional bodies and assisting in UK and international research and development projects.

Hon. Treasurer John Pearce

Trustee and treasurer John Pearce discussed TOFS’ accounts. 2019 was a record year for income, thanks to the great effort of our members and exceptional one-offs from the Forrester Trust and Pretious legacy. This income allowed us to invest in medical research, projects and (extra) resources and the TOFS general fund. Unfortunately, due to Covid-19, in April and May 2020 we have seen a 57% drop in income. The 2020 budget has been reviewed and has resulted in printed Chew being temporarily suspended. We are applying for grants and calling for our members’ fantastic fundraising to help!

Lemans were voted to continue to be TOFS accountants. Dennis Harvey, Darrell Hill and Sue Lewis-Jones were re-elected as trustees.

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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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