Charlie Burke has developed a thick skin when it comes to cancer. After surviving bouts with colorectal, thyroid and skin cancers, he was well acquainted with the routine of doctor’s appointments, hospital visits, surgeries and regular treatment that accompany disease by the time a GIST tumor was discovered in his colon. However, as any of our members will tell you, GIST comes with its own unique lexicon to master and set of challenges to overcome.
In a recently published article in Nature Genetics, several prominent cancer researchers and GIST experts, led by Dr. Dr. Yuexiang Wang and including Dr. Jonathan Fletcher of Brigham & Women’s Hospital and Dr. Matthew van de Rijn of Stanford University Center, who are both members of the LRG’s research team, discuss new research findings that may potentially help identify GIST patients with a future high risk for metastases.
The LRG is proud to announce that the inaugural class of our GIST Expert Patient Training Program has been completed. The class, which was open to GIST patients, caregivers, and other members oaf the extended GIST community, was comprised of just under 20 students and was a comprehensive offering designed to help participants better understand the science behind GIST.
As July 13’s GIST Awareness Day draws closer we are encouraging all of our members to make the day their own by spreading the word in their local communities. Raising awareness about GIST eases obstacles to education, treatment and research that make this disease so difficult to battle. GIST Awareness Day puts the power to help bring about this change in the hands of you, our members, who have been most profoundly touched by GIST.
Alianza GIST members from Argentina, Bolivia, Brazil, Colombia, Chile, Cuba, Venezuela, Guatemala, Mexico, and Spain joined representatives from the Life Raft Group in Zurich, Switzerland from May 14 to 17. The major focus of the meeting was to develop a new methodology in order to move towards Alianza GIST autonomy.
With the beautiful mountains of Switzerland and Lake Zurich in the background, 44 GIST Patient representatives from 28 countries and 32 patient groups/organizations convened in Zurich for the New Horizons GIST meeting from May 14-17, 2014.
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.
On Saturday, May 17th in the Caesars Palace poker room in Las Vegas, the Poker For Hope charity tournament took place, benefiting Tia’s Hope, The Life Raft Group, and Phase One Foundation. Poker for Hope was started by these three non-profit cancer support organizations with ONE goal in mind…A CURE!
A recent study by Margaret von Mehren, MD and Dr. Natthapol Songdej of Fox Chase Cancer Center discusses the role of new treatments for GIST
In December, 2013, the Life Raft Group launched its “We Are the Cure” campaign to fund GIST research in response to the shrinking pool of available funds. As a rare disease, GIST research is impacted more than other more common cancers like breast and colon. Institutions like the National Cancer Institute are funding just four to five percent of all research proposals which means that a rare cancer like GIST is lost amongst the roughly 200 cancers competing for funding.
