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PAWS-GIST - “Improving treatment and finding the cure for rare GIST Cancers in Young People”

We are parents who have received the devastating news that our children have a rare form of cancer called Paediatric Wildtype GIST, (Gastro Intestinal Stromal Tumour).  GISTs are malignant tumours of soft tissues in the gastro-intestinal tract (the stomach and intestines) and are a form of sarcoma.

At present, there is no cure for this type of cancer, with limited research currently being undertaken in the UK.  Furthermore, due to its rarity in children, there is no specialist group with expertise in the child form of this cancer in the UK.

We aim to change this situation and are currently working with GIST Support UK and GIST experts in the UK who specialise in Paediatric and Wild type GIST.  This group is known as “PAWS-GIST” (Paediatric Adolescent Wildtype Syndromic-GIST).

By pulling together the combined knowledge of these experts we hope to pool & share knowledge, define the most effective treatments, improve life expectancy/quality of life and ultimately find a cure for Paediatric/Wildtype GIST. We would also like to find an appropriate way to include Paediatric GIST patients in clinical trials of drugs that could provide the cure or at least the best treatments.

We currently know of at least 8 Paediatric GIST cases in the UK, most have Wildtype GIST. There are many more, older patients with Wildtype GIST in the UK, whose lives are similar to those of our children. All have questions and fears that are not easily answered and we are hoping that our focus group of doctors in combination with others in America & Europe will find answers and evolve treatments that will benefit our children and other Paediatric & Wildtype GIST cases in the future.

We are raising funds for research and to develop the best care and treatment for our children so that they stand the best chance of beating this cancer.

On behalf of our girls, thank you so much for your help.

Jayne Bressington
Leigh Hibberdine
Lesley McAully

If you would like further information on GIST Cancer, we invite you to visit the following websites:-

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

THANK YOU TO THE FOLLOWING FOR THE GENEROUS OFFLINE DONATIONS RECEIVED AS FOLLOWS:-

08/09/10 - Jayne Bressington “I am honoured to be the first to make a donation to this fantastic cause. We will find a cure!" (£100.00 +£28.21 Gift Aid)
07/12/10 - Mr Anthony Hibberdine - £100.00
11/01/11 - Mrs Rosemary Hatch - £50.00

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