I am writing to let you know that having served three months’ notice, I will be stepping down as Vice Chair and Trustee of GIST Cancer UK at the end of May 2022.
I have served as a trustee of GIST Cancer UK since 2010 and as Vice Chair of the charity for the past nine years, having joined this community when my daughter Eve (centre of picture below) was diagnosed with Paediatric Wild-type GIST and being advised that there were “no treatments, no cure and no research” for her cancer.
Since then, I have devoted my life to improving treatments for GIST cancer patients, worked to raise significant funds to set up the PAWS-GIST Clinic and research, The National GIST Tissue Bank and stimulated an array of research projects to try and improve the outlook for patients.
Having set out to create an infrastructure for research into PAWS-GIST, as time went by my responsibilities evolved to include being the operational lead for GIST Cancer UK. Through time the workload increased significantly, in proportion to the growth and development of the charity.
GIST Cancer UK and the PAWS-GIST clinic have come a long way since 2010…
This video from ten years ago illustrates where I started.
In view of the significant increase in workload accompanying operational leadership of GIST Cancer UK, I feel it is now time to share this with others and so have given up my trusteeship of the charity.
However it is planned that I will retain a number of responsibilities:
From 1st June 2022 I will continue to:
• work as the Patient Director of PAWS-GIST with Dr Bulusu and the PAWS-GIST consortium of specialists
• manage GIST Cancer UK’s research programme and Medical Advisory Board
• co-ordinate the activity of the National GIST Tissue Bank
• maintain contact with the GIST patient, clinician, researcher and advocate communities.
• advise GIST Cancer UK, as an independent GIST patient advocate with a wealth of experience and knowledge.
Moving forward, if you have any questions specifically related to GIST Cancer UK the charity, please address them to firstname.lastname@example.org and Nic Puntis (Chair), or a relevant member of the GCUK team will come back to you.
From 1st June 2022, I can be contacted via the following email addresses:
I hope to remain a member of the various rare and GIST Cancer advocacy groups and societies as a volunteer patient advocate and Patient Director of PAWS-GIST.
I have enjoyed engaging with you all and look forward to continuing our relationship from a slightly different perspective.
So, it is au revoir rather than goodbye.
Patient Director PAWS-GIST