PAWS-GIST was started in 2010 further to Eve my 15-year-old daughter being advised that there was "no treatment, no cure and no research" into her type of GIST cancer. Our family was totally devastated.

Having attended the NIH paediatric WT GIST clinic in Washington USA with Eve, we felt empowered but also angry that we did not have a clinic and research happening in the UK. Desperate to help Eve I decided to find try and find a way to set up a clinic in the UK with the aim of stimulating research to find treatments and a cure for Eve and others like her.

Having presented my proposal to newly formed charity GIST Support UK (now GIST Cancer UK), I was invited to become a trustee of the charity. Then further to engagement with GIST specialist Dr Ramesh Bulusu from Addenbrookes Hospital in Cambridge, the PAWS-GIST initiative was born.

Engagement with GIST specialists led by our clinical lead Dr Ramesh Bulusu , identified that to achieve our aim, we would need funds and an infrastructure including a National GIST Tissue bank, and a PAWS-GIST patient clinic to support research in the UK.

To begin with my family friends and everyone in my community and network went above and beyond the call of duty to help raising funds, their support has always been unwavering throughout this whole horrendous ordeal.

Devastatingly my darling Eve lost her battle with this disease in March 2018. Our lives will never be the same and the pain of her loss will never go away.

Since we set the ambitious targets for the PAWS-GIST campaign in 2010 and with the tireless support of Dr Bulusu & the PAWS-GIST consortium of specialists, patients families and friends working to raise funds and support our cause we have so far created and funded the following in the UK:

- The PAWS-GIST Clinic (www.pawsgistclinic.org.uk)

- The National GIST Tissue Bank

- The National GIST Register

- Researchers working to grow wildtype GIST cells

- 8 PAWS-GIST research projects (so far)

We are working on the very first PAWS-GIST consensus document and to establish PAWS-GIST clinical trials here in the UK.

We have met so many PAWS-GIST patients over the years and we continue to raise funds to assist patients to attend the PAWS-GIST Clinic and to fund PAWS-GIST research so that patients stand the best chance of beating this cancer.