Thank you for taking the time to visit the PAWS-GIST campaign page.

PAWS-GIST is an alliance of specialist doctors and GIST patients working to improve treatment and find the cure for rare GIST cancers in younger people.

Paediatric, Adolescent, Wildtype & Syndromic GISTs (Gastrointestinal Stromal Tumours) are rare forms of cancer. GISTs are malignant tumours of soft tissues in the gastro-intestinal tract (the stomach and intestines) and are a form of sarcoma rather than a carcinoma.

Background

PAWS-GIST started in 2010 further to 15-year-old Eve Bressington being advised that there was "no treatment, no cure and no research" into her type of GIST cancer. A devastating outlook.

Having attended the NIH paediatric WT GIST clinic in Washington USA, Eve's mother (Jayne) determined to set up a clinic and research in the UK with the aim of stimulating research to find treatments and a cure for Eve and others like her.

Having presented her proposal to newly formed charity GIST Support UK (now GIST Cancer UK), Jayne was invited to become a trustee of the charity and the PAWS-GIST initiative was born.

Engagement with GIST specialists led by our clinical lead Dr Ramesh Bulusu from Addenbrookes Hospital in Cambridge, 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.

The programme of work that commenced is outlined in the poster below.

We set to work networking and raising funds to achieve the targets for the PAWS-GIST initiative.

GIST Cancer UK created a restricted fund meaning that funds donated for the PAWS-GIST initiative are reserved very specifically for the PAWS-GIST Clinic & PAWS-GIST Research and to achieve the aims agreed with Dr Bulusu in our inaugural PAWS-GIST meeting.

Since we set these ambitious targets in 2010 and with the tireless support of Dr Bulusu & the PAWS-GIST consortium of specialists, 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 will soon launch the very first PAWS-GIST consensus document and are working to establish PAWS-GIST clinical trials here in the UK.

We have met so many PAWS-GIST patients at our UK clinics over the years. All have questions and fears that are not easily answered. Our dedicated consortium of doctors work tirelessly to find answers and treatments that will benefit PAWS-GIST cancer patients.

We continue to raise funds for the PAWS-GIST Clinic and research so that PAWS-GIST patients stand the best chance of beating this cancer.

Thank you so much for your help.

Jayne Bressington

Eve's Mother

Patient Director of PAWS-GIST

jayne@pawsgistclinic.org.uk

If you would like further information about the PAWS-GIST clinic and GIST Cancer, we invite you to visit the following websites:

https://www.pawsgistclinic.org.uk/ The specialist PAWS-GIST Clinic.

https://www.gistcancer.org.uk/ GIST Cancer UK, which offers support to all GIST patients and carers in the UK.

http://www.gistsupport.org/ US based GSI provides education and support to GIST cancer patients, their families and friends worldwide.

http://www.pediatricgist.org/ a US based site offering information and support for all Paediatric GIST patients and carers worldwide.

http://www.liferaftgroup.org/ a US based site offering information and support to all GIST patients. Together with our PAWS-GIST initiative they have formed the SDH deficient GIST consortium.

http://www.sarcoma-uk.org/ a resource for sarcoma patients in the UK, offering a gateway to information about the different types of sarcoma.