News

NIH Clinic shares information on 3 trials

The Clinic is a collaboration between clinicians and researchers to collect data, investigate and develop treatment for Gastrointestinal Stromal Tumor patients who do not have either c-KIT or Platelet -Derived Growth Factor Receptor alpha (PDGFRA) mutations. This includes patients with Carney’s Triad, Carney- Stratakis Dyad, and Wildtype GIST. These tumors frequently stain negatively for a protein called Succinate Dehydrogenase, a condition referred to as being Succinate Dehydrogenasedeficient (SDH-deficient). There are currently three clinical trials in development for this population.

By |2019-09-20T13:54:00-04:00August 1st, 2012|Clinical Trials, News, Pediatric GIST|

New gene panel takes mutation testing to a new level

A new gene panel takes mutation testing to a new level. The panel tests for mutations in 23 genes at once will help to properly classify wild-type GIST patients.  Working with next generation sequencing [...]

By |2019-09-20T13:54:43-04:00August 1st, 2012|Mutational Testing, News, Pediatric GIST|

A Dutch youth’s global search for other patients with Carney’s Triad

Since he turned 14, Jasper Smit of the Netherlands has been searching for patients like him. This is very difficult because Carney’s Triad is an extremely rare syndrome. Worldwide there are about 30 known patients with a ‘complete’ Carney’s Triad (GISTs, pulmonary chondromas, paragangliomas). Incomplete Carney’s Triad affects less than 100 patients in the world. This means that they have two of the three types of tumor (mostly GISTs and pulmonary chondromas). In his own words, here is Jasper’s story.

By |2019-09-20T13:56:51-04:00August 1st, 2012|News, Pediatric GIST|

I found a friend in the LRG

I was caught up in a whirlwind when I found out that I had cancer on a Monday morning in October of 2011. I was admitted to the hospital that same day in preparation to have emergency surgery the next morning to remove the tumors and then found out I had GIST - all in a 24 hour period! I felt like my world had turned upside down and shortly after that during my recovery, I was lucky enough to find Life Raft.

By |2019-09-20T14:25:37-04:00June 1st, 2012|News|

Ninth Swiss meeting covers uplifting topics

About 80 GIST patients, relatives, GIST experts, interested professionals, physicians and representatives of the pharmaceutical industry gathered at the Restaurant Au Premier at Zurich Main Station in Zurich on April 8 for the ninth meeting of the Swiss GIST group. A warm welcome was extended to special guests Candy Heberlein, President of the Swiss Foundation for the Promotion of Bone Marrow Transplantation, and Christel Jäger-Freysoldt, chief executive of Das Lebenshaus in Germany.

By |2019-09-20T14:40:30-04:00June 1st, 2012|News|

Spunky Texan fought GIST bravely

Betty Hayes Arnett went to be with our Lord and Savior Tuesday, Feb. 28, 2012 at age 64, after a long and courageous battle with cancer. She was born Aug. 23, 1947 to Ruel and Mattie Hayes in Corsicana, Calif. She was a beloved mother, grandmother and wife. She was a longtime member of Missionary Baptist Church of Corsicana.

By |2019-09-20T14:51:42-04:00April 1st, 2012|In Memoriam, News|

New report finds most hospital errors go unreported

In a January 6, 2012 New York Times article, “Report Finds Most Errors at Hospitals Go Unreported” by Robert Pear, the author explained that federal investigators have shown in a new report that hospital employees recognize and report only one out of seven errors...

By |2019-09-20T14:57:58-04:00April 1st, 2012|News|
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