Nic Puntis - Chair
I was diagnosed, just before my 40th birthday, in March 2010, with a 8cm GIST in my stomach. It was successfully removed but found to be high risk due to its mitotic count. I was therefore, put on adjuvant imatinib for 3 years. I am still disease free and am checked every year.
I went to my first GCUK meeting in 2010 and volunteered to join the Trustee board in 2012, becoming Chairman in 2015.
Mark Atlay - Secretary
For most of my working life I was in Higher Education. In 2016, following a couple of incidents of DVT, I was sent for a CT scan which showed the presence of a GIST in my stomach wall. Surgery and three years on Imatinib followed.
Touch wood recent CT scans have shown no reoccurrence and in October 2021, I took over as secretary to the Board of Trustees of GIST Cancer UK, helping support their regular activities and meetings, the strategic direction of the charity and various other aspects such as the website and patient engagement.
John South - Treasurer
My daughter was diagnosed with a PAWS-GIST tumour aged 18 and despite a partial gastrectomy, needed further surgery 7 years later to completely remove her stomach and a section of her liver. She was lucky enough to be one of the first patients to receive some specific internal radiotherapy treatment (SIRT) in 2017 and is now in remission.
As a family, we attended the GIST Cancer UK Patient meeting in Manchester in 2017. I was very impressed by the work of the charity which offers, not only support to the sufferers of GIST, but also funds many research projects which we hope will help find a cure for the disease. I immediately volunteered to join the board and have since become the treasurer. I have almost 50 years’ experience in the NHS after a career in management.
Tony Manuel - Research & IT Support
I was diagnosed with SDH-deficient GIST in September 2019 after two stomach ulcers burst suddenly. The tumour and some metastatic lymph nodes were removed in January 2020 and I am now on an annual monitoring program. I found the support and information provided by GIST Cancer UK invaluable during my early treatment plan, so I was very pleased to offer my services as a Trustee in June 2020.
With my background in telecoms and engineering, I am supporting our research program and IT systems administration.
Sharon Bethell - Events Manager
I was diagnosed with Wild-Type GIST in 2014 and became a Trustee of GCUK shortly after. I have managed GIST Cancer UK's meetings for 5 years having previously worked in the events industry for 15 years. My role is to work with the Trustees in communicating and managing the regional Patient/Carer meetings that we hold each year and to assist with speaker selection. This includes data management for those events whilst also supporting the Trustees in general research and data capture.
Terry Riley - IT Support
My GIST diagnosis in July 2016 came as a total shock. Three operations, one clinical trial and almost four years later, I'm currently on a daily 400g dose of Imatinib, but not yet free of the GIST. I was very happy to be elected a Trustee for GCUK early in 2020.
I am a member of the GCUK IT support team, with responsibility for the operation of the ListServ forum and reporting on that and the helpline functions.
Drewe Lacey - Help Line and Volunteering
I had a 10.5 cm tumour removed in April 2023. The location, size and an extremely high mitotic count means a high risk of re-occurrence. Fortunately, given an Exon 11 mutation I am able to take imatinib, 400ml daily and just into second year. So far, four quarterly scans have been clear.
I manage a variety of side effects including fatigue and continue with many community and charity roles including becoming a Trustee of this Charity in July 2023. I have volunteered to take the Lead on the Helpline and Volunteering, and also take an interest in the medical research and mental health issues associated with GIST Cancer.
Rosalind Langford
My tumour was first discovered during Lockdown and was successfully removed with clear margins in April 2021. So began my new life as a GIST patient!
Analysis showed it to be Exon 11 with a high mitotic rate and this together with its size and location meant that there would be a high risk of recurrence. I was put on adjuvant Imatinib for 3 years and began to understand that I had a type of cancer which was rarely seen and not very well known. When I needed answers the support that was given by GIST Cancer UK was invaluable and the Forum so supportive. My husband and I attended a patient/carer meeting and we found the day uplifting and very helpful, and it inspired me to see if I could help raise awareness of this very rare type of cancer.
In January 2023, I joined the Board with the aim of facilitating awareness of GIST cancer to the wider community. My responsibilities are primarily in Communications, … creating a Newsletter, and oversight of our Social Media activities.
Cathy Hampshire
I joined the board of GIST as a Trustee in January 2024. Prior to this I have worked in Primary Education for more than 25 years more recently as a Headteacher of a large Junior school. I live in West Yorkshire and I enjoy walking and being outside in my garden. I photography and travel. I love spending time with my grandchildren and extended family.
I was finally diagnosed with GIST in upper intestine/stomach in May 2021 – removal/resection October 2021 – 15cm tumour. Severe reactions to Imatinib and Sunitinib – causing liver problems. Metastatic GISTs diagnosed June 2023, I am currently taking Regorafenib.
David Lane - Fundraising
I am 58, live in Aberdeen and was diagnosed with a very large GIST late in 2017. I was an acute admission to Glasgow Royal Infirmary early in January 2018 where I had extensive but very successful surgery. As a High Risk patient I am on Adjuvant Imatinib indefinitely.
A little while before I was diagnosed, I had cycled the 120 miles from from Inverness to Aberdeen to raise money for a cancer support charity, although I am not going to be able to repeat that feat anytime soon, I am back playing golf and living a fairly normal life.
In 2021, I attended an online seminar hosted by GIST Cancer UK, I was impressed by the quality of the presentations and the commitment of the people involved. I volunteered to help and became a Trustee of the charity in January 2022.
Amalia Formoso
I was first diagnosed with 5 wild-type GIST tumours just after my 30th birthday. After a successful full gastrectomy I thought I was disease free but, two metastatic lesions were observed in my liver in July 2018.
I went to my first PAWS-GIST meeting in December 2018 and it changed my approach to my condition. It helped me realise that, although it is a rare cancer, I am not alone and that together we can find a cure. I became a trustee because I want to spread the word about PAWS-GIST and raise funds for research and support the PAWS-GIST clinic.
Our Life President
Judith Robinson - Life President
Judith has been a leading member of GCUK since it was first set up as a sub-group of Sarcoma UK in 2004. She then became Chair and GCUK was set up as an independent charity in 2008. Judith continued as Chair, and subsequently as Vice-Chair, until her retirement in 2015. She continues to be takes a close interest in the work of GCUK.
Our Patron
Dr Nick Lydon - Patron
Dr Nick Lydon is an award winning British Scientist and entrepreneur who has played a decisive role in the development of Gleevec (Imatinib). Gleevec has saved and prolonged the lives of thousands of patients suffering from GIST and CML and has had a huge impact on cancer drug discovery. Nick now lives and works in America but still retains a keen interest in GIST and we are delighted that he has agreed to be a patron of GIST Cancer UK and the PAWS-GIST initiative.
Terry Weldon
Terry was a trustee for many years and now supports the work of the Helpine.
Marion Oliver - Helpline Support
Marion is a GIST patient and provides support to patients and carers who call our helpline.
Jayne Bressington
