Strategic Plan 2026 - 2028

Recent years have seen the work of The George Pantziarka TP53 Trust expand, and new demands on our time have arisen since we formed our last strategic plan. We have taken these into account in reviewing and prioritising the next stage of development of our work. The issue of capacity is of particular pertinence, and we have adjusted our approaches to certain aspects of our endeavours in order to address this. We have also reviewed and rated areas of our work in relation to their importance to achieving our mission of supporting individuals and families with LFS.

We will continue to offer support through the following activities:

• Offering medically supported advice via our website, email and social media, including information regarding services.

• Holding a free annual conference open to individuals and families with LFS as well as medical professionals

• Maintaining a team of patient advocates/ambassadors, who are available to offer advice and support

• Continuing to raise awareness of LFS amongst the medical professions, through our conference and projects we are involved in.

• Continuing to fund virtual LFS support sessions delivered by Maggie’s

• Working with other organisations to promote and support research that provides direct benefit for people with LFS

• Working with other organisations and individuals to improve UK-wide clinical services to people with LFS.

We regard all of the above as essential services.

Over the years, we have built close relationships with clinicians and researchers in the UK and abroad. This is something we will continue to do, both with clinicians and researchers who are already working in the field of LFS and those who have contact more generally with patients e.g. GPs.

We aim to ensure that GPs are informed of issues, when making healthcare decisions, such as potential effects of radiotherapy on LFS patients. To do this, we will focus on arming patients with information, such as is available in our information pack and on our website, to which they can draw their GP’s attention.

We will also continue to network with other LFS organisations around the world, and build on our relationships with charitable organisations that focus on cancers predominant amongst LFS sufferers.

The establishment and maintenance of partnerships with relevant organisations and individuals is seen as being of utmost importance in enabling the successful development of our mission to support people with LFS.

Research is an important focus for the Trust, particularly research that focuses on cancer prevention for people with LFS. During the period 2026 – 2028 we will continue to collaborate with The University of Oxford and the University of Cambridge on 2 research projects.

1. University of Oxford

Our connection with the University of Oxford (Cancer Centre) began with involvement in developing the Metformin in Li Fraumeni (MILI) trial. This was enabled through collaboration with MILI’S lead, Professor Sarah Bladgen. The relationship with Professor Blagden continues to be an invaluable part of achieving our mission. Now that MILI has launched, we will continue to be involved in an advisory capacity, including involvement on the trial management committee, as well as supporting ongoing patient recruitment and funding travel.

We will continue to respond to any new requests to identify people with LFS to participate in the buddying scheme in LFS-related research at The University of Oxford. We will continue inviting research students to attend our annual conference and online events and to contribute poster presentations.

2. Sanger Institute (Cambridge)

We will continue our involvement with the LiFraumeni through Time Study (LIFTS) at the Sanger Institute (Cambridge), which aims to learn more about cancer incidence in people with LFS. The Trust will continue to contribute to recruitment, planning and dissemination.

3. LiNCR

Our LiFraumeni Network for Clinicians and Researchers (LiNCR) is seen as crucial for ongoing collaboration with the medical profession. However, it presents challenges to our capacity. Whilst we made a good start with recruitment of 25 participants, followed by an online meeting and the holding of a national conference hosted by The University of Oxford, it has been difficult to maintain this momentum. In 2026 and 2027 we will be looking to implement ways to more efficiently and effectively develop LiNCR. This may include identifying a volunteer LiNCR administrator.

Another crucial area is support for young people with LFS. We have much work to do in this respect. Accordingly, in 2026 we will define more clearly what we mean by ‘young people’, and focus our efforts on specific age group/s to begin with. We will prioritise, and outline in detail the action to be taken to fulfil those priorities. Discussions about how to increase capacity will be central to this.

We have begun, and will continue, to improve and expand our ability to keep people informed of our work and of any issues related to LFS. We will continue to extend our reach through:

• Our new, expanded and more comprehensive information pack for people with LFS. We will ensure that all newly diagnosed patients receive a copy from their genetic testing centre.

• Our quarterly electronic newsletter, established in 2023, which was made possible by our recruitment of a media/press volunteer. In 2026, we will focus on expanding the list of recipients.

• The development of an improved website. The website design has been completed by volunteers, and will be launched in 2026. The engagement of a volunteer to support website maintenance will be crucial to its smooth running.

• Our presence on Facebook, Instagram, Twitter and Linkedin. This is an ongoing area of development, which we will continue to expand.

We do not need to significantly expand our funding sources at the present time. We continue to maintain contact with funders who have contributed to the Trust in the past, for whose support we are grateful. If opportunities to commission or be involved in specific projects arise in the future, we will fundraise accordingly.

We will increase our bank account reserves to 20k.

We also note that fundraising events are a positive focus for many people with LFS, and we acknowledge that the funds raised make a significant ongoing contribution to the Trust’s work. Accordingly, we will support this wherever we can.