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 8 trustees:


Nic Puntis 
(Chair)

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


Karen Langdon (Fundraising)


Lena Stoll 
David Falconer (Treasurer)
Sheena Kynoch (Secretary)

Alex Jacobs

Victoria Bassett  (Fundraising & Social Media)

 

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 www.pawsgistclinic.org.uk. 

Our secretary is Sheena Kynoch and fundraising for GIST Support UK and for PAWS-GIST is co-ordinated by Victoria Bassett (nee Janes) and Karen Langdon respectively.

David Falconer has taken over from Lena Stoll as Treasurer with effect from January 2017.  

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

Alex Jacobs has recently joined the Board as a new Trustee and will be helping with fundraising, social media and IT. 

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 admin@gistsupportuk.com.

Membership

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)

 
   

Offers of support for our work are always welcome.

If you have a skill that you can offer to help with our work, we wouild love to hear from you at admin@gistsupportuk.com.

Funding

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!

 

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>>>.  

Michael Sayers...news

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

Forthcoming Patient Meetings

  • Friday 6th October in Cardiff
  • Thursday 7 December in Edinburgh
  • Friday 9th March 2018 in London
  • Friday 5th October 2018 in Manchester

More information will appear on this website in due course.

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.

Masitinib
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.