Developing GISTKids.org
During the Life Raft Group Life Fest 2014, a panel of young GIST patients and family members gathered around a table to discuss ideas for advocating for SDH-deficient and wild type GIST. The group [...]
Alia Coleman: To Know Fear and to Overcome It
Alia Coleman, a Pediatric GISTer, has known fear, and works at overcoming it daily. She is an inspiration to us all. This video was used as part of a presentation on fearlessness at the [...]
LRG-NIH Virtual GIST Tumor Board Goes Global
The Life Raft Group, in partnership with the National Institutes of Health, is pleased to announce that the second meeting of the NIH-LRG Virtual GIST Tumor Board was held on October 3, 2014. Virtual GIST [...]
PAWS-GIST Cancer Clinic Opens in the UK
Jayne Bressington, Patient Director of the PAWS-GIST Initiative & Trustee of GIST Support UK The first national Pediatric, Adolescent, Wild-type and Syndromic GIST (PAWS GIST) clinic in the United Kingdom was held on [...]
NIH Wildtype GIST Clinic for 2015 Announced
A Wildtype GIST Clinic has been announced by the National Institutes of Health, USA. The upcoming “Pediatric and Wildtype GIST Clinic” at the NIH is scheduled for June, 10th-12th, 2015. There are spots available for [...]
NIH Clinic provides support and a healthy dose of fun
The 12th Pediatric and Wildtype GIST Clinic was held May 21 to 23, 2014 at the National Institutes of Health in Bethesda, Maryland. Coordinated by Dr. Sosipatros Boikos, and based out of the NIH Pediatric Oncology Department under the direction of Dr. Lee Helman, the Clinic is collaboration between clinicians and researchers to collect data, investigate and develop treatment for GIST patients who do not have either c-KIT or PDGFRA mutation.
Introducing the NIH-LRG Pediatric GIST Virtual Tumor Board
The Life Raft Group is excited to announce that we will be partnering with the National Institutes of Health to launch the first Pediatric GIST Virtual Tumor Board!* Due to severe funding cuts that reduced [...]
Faces of GIST – Bella Rocco
What is your name? Bella Rocco How long have you been living with GIST? Since I was seven years old. I am twelve now.
An advocate’s rewarding experience at the NIH Clinic
NIH Clinic Participants From the moment I landed at the Washington Reagan Airport to the time I took off to fly back home, the Pediatric and Wildtype GIST Clinic at the National Institutes [...]
Sosipatros Boikos takes helm at NIH Clinic
Dr. Sosipatros Boikos, a graduate of University of Crete in Greece, very early and while he was a first year medical student, developed an interest in cancer genetics. After graduating from medical school, he came to the National Institutes of Health as a Visiting Research Fellow to work on the genetics of Wildtype gastrointestinal stromal tumors—those GIST tumors without a KIT or PDGFRA mutation—under the supervision of Dr. Constantine Stratakis, the researcher who identified Carney-Stratakis Syndrome.