Meet our Trustees!

About GIST Support UK

GIST Support UK is a charitable trust which acquired its charitable status in April 2009. Before that time it was a subgroup of Sarcoma UK, and the two organisations continue to maintain a close relationship.

The stated objectives of GSUK are :

  1. to promote and protect the physical and mental health of patients with Gastro-Intestinal Stromal Tumours (GIST) in the United Kingdom through the provision of information, support, education and practical advice to them and their carers;

  2. the relief of sickness and the preservation of health in particular by promoting and supporting research with the publication of the useful results thereof and the development of more effective treatment and care for patients with GIST;

  3. to advance the education of the general public and health professionals in all areas relating to GIST

Our Life President

Judith Robinson 

Judith has been a leading member of GSUK since it was first set up as a sub-group of Sarcoma UK in 2004.  She then became Chair and GSUK was set up as an independent charity in 2008. She 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 GSUK.

Our Trustees

GIST Support UK is currently managed by the following board of 7 trustees:

Nic Puntis 

Jayne Bressington
(Vice Chair & Patient Director PAWS-GIST)

    Stella Turner    (Fundraising & Volunteer Support)    
James Palgrave    (IT support)  David Falconer (Treasurer)
Sheena Kynoch (Secretary)

Victoria Bassett  (Fundraising & Social Media) 

Terry Weldon (Listserv & Helpline) 

Amalia Formoso   (Corporate Fundraising)

Nic Puntis is our Chair and has been a trustee of GIST Support UK for several years. He is supported by Jayne Bressington as Vice Chair. Jayne is also Patient Director for PAWS-GIST 

Our secretary is Sheena Kynoch and fundraising for GIST Support UK and for PAWS-GIST is co-ordinated by Victoria Bassett (nee Janes) with Support from Stella Turner and Amalia Formoso.

David Falconer has taken over from Lena Stoll as Treasurer with effect from January 2017.  Lena still volunteers for GSUK. 

David joined the board in 2013, following his retirement from Pfizer UK, where he spent many years working on GIST related matters.  

James Palgrave took over as our IT lead in 2018 and Terry Weldon provides invaluable support to patients and their families via our private online patient forum (Listserv) and telephone helpline.

The Board is very grateful for the support of volunteer Sharon Bethell who organises our Patient Meetings, David Robinson who has been the mainstay of GSUK's technical support for many years and to Marion Oliver and Dave Cook who are part of our patient helpline support.

Our grateful thanks go to all existing and previous trustees who have given of their time and expertise to improve support and services for GIST patients. 

These include: Barry Davis, Irene Cook, Nicola Wardle, Barbara Dore, Michael Sayers, Tim Mason, Debbie Mitchell, Terry Dickinson, Leigh Hibberdine, Patricia Thomson, Linda Butcher,  Valerie Harris, Christopher Rickman.

Appointments to the Board of Trustees are normally for a period of three years, with members presenting themselves for reappointment on a rotational basis.

We are always interested to hear from individuals who would like to ensure that GIST patients are supported and that GIST research is stimulated. Please do contact us if you are able to help in any way at


Because GSUK is a charitable trust and not a membership organisation, it does not have a "membership" in the legal sense. However we do maintain a database of patients and carers who have contacted us for help and support, and it is to names on this database that news and information on meetings is circulated.


Our Specialist Volunteers

Sharon Bethell (Volunteer Events Manager)
David Robinson
(IT support)

Alex Jacobs



Lena Stoll

(Treasurer Support)


Karen Langdon (Fundraising)

Offers of support for our work are always welcome.

If you have a skill that you can offer to help with our work, we would love to hear from you at


GSUK is supported in its work by specific grants from Pfizer and Bayer and unrestricted educational grants from Novartis, together with charitable donations from patients, carers, and other sources.  (See also our Fundraising page)

Donations and help with fundraising are also gratefully received. 

Donate Online to GSUKThank you for supporting our work!


Donate to our PAWS-GIST FundHelp us to Find the Cure!


Clinical Trial - 3 v 5 years adjuvant imatinib recruitment extended until 31st March 2020- trial centre list update here

The next PAWS-GIST clinic is happening on Friday 12th April 2019. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Leeds on Friday 4th October 2019 and London - 6th March 2020. If you would like to join us please email  to register. We look forward to seeing you...

Rare Cancer Patient Survey - collecting feedback on rare cancer patient experience with clinical trials...

On the 10th October the Scottish Sarcoma network are holding a day called RISE at the Western Park Hotel in Falkirk. The day is dedicated to people with a sarcoma diagnosis and their families to focus on "what matters to me". This poster contains the registration details if you would like to attend. GIST Support UK will be represented at this meeting and we look forward to seeing you. 

A big thank you to Scotmid Co-operative for choosing to support GIST Support UK and the development of our national tissue bank. Read more here


If you missed any of our previous meetings, you can view the speakers' presentations here

Clinical Trial - 3 v 5 years adjuvant imatinib - trial centre list update here

19th August 2017 - Page 19 of the Times GIST report - READ HERE

New UK clinical practice guidelines for the management of gastrointestinal stromal tumours (GIST) published by British Sarcoma Group - NEWS >>>

GSUK's Chair Nic Puntis discusses the BBC's report on the Cancer Drugs Fund on BBC Wiltshire Radio - NEWS>>>.  

Update on GIST clinical trials that are recruiting and in the pipeline....

We have launched our first GIST patient survey and hope to gather a better understanding of the landscape for GIST patient treatment in the UK. The survey closes on 10th September 2016 so if you would like to participate please complete the survey by clicking this link

'ALT' GIST Trial to open in the UK soon! We have been alerted to a new trial that will be opening in the UK in the near future for metastatic GIST patients. Read more on our Trials & Research page 

PAWS-GIST Clinic 7 - Newsletter June 2016

GSUK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.

GSUK Research Update 2016 - Read all about it here

NHS England's Sarcoma Service Specification consultation is open until Weds 20th April 2016.       Please register your views by responding directly via this link.                             GSUK's response can be viewed here

Cycle for GSUK! We have four allocated charity places on the RideLondon event for this year and also for 2017 and 2018. Go to our News page to find out more!

The Masitinib Trial is now open.  For further details of this trial, and to find out which centres and clinicians are involved, please go to our Research & Trials page. 

Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients! Read more!

Can you help Professor Eamonn Maher with his research Study? If you have had, or have, two or more primary GISTs, or a GIST and another tumour, find out more at the bottom of our research page

PRESS RELEASE - UKTV announces GIST Support UK as its Charity of the Year 2015

TUMOUR BANK UPDATE: "We have been granted approval from the NHS ethics committee for our National GIST Tissue Bank which will store these valuable GIST tumour samples for research. If you are about to have an operation and would like to donate your tissue for research please email  with your contact details. Visit our Retention of tissue page for regular updates.

Scottish Sarcoma Network: Interested in attending their Sarcoma education days or finding out about the services on offer ? Read our News page

Use of human tissue
Do go to our new "Retention of Tissue" page and please sign a consent form!

GSUK funds research!
GSUK provides £20,000 from donated funds to help start a research project at the Royal Marsden. Visit our News page for further information and picture.

Funds being raised for UK PAWS GIST clinic
See our News Page for more information.

NICE approves improved treatment for ascites
The PleurX system allows the patient to drain fluid from the abdominal cavity without having to pay repeated visits to hospital. More information on our News Page.

European Commission approves three years' adjuvant use of Glivec
Visit our News page for more details.

A press release in February claiming the effectiveness of this drug as a replacement for Sunitinib appeared to be premature at the time. However subsequent news may be more encouraging! See our News page for more details.