It all started shortly after my 36th birthday in February 2001. I was working for a small oil company as a tanker driver here in Medford, Ore. I began to develop severe pain in my lower right quadrant and lack of energy that I ignored until I could no longer justify not seeking medical attention.
Life Raft Group member Jason DeLorenzo held his annual “DeLoBQ” fundraiser last month in Alexandria, Virginia. The BBQ has raised almost $2,000 thus far, and donations are still coming! Jason explains the growing success of [...]
The first in a series of New York Times articles by science writer Gina Kolata on new approaches to cancer treatment underscored the type of cutting-edge approaches taken by the Life Raft Group’s own team of researchers. [...]
An agreement to secure the entry of Gleevec for Guatemalan GIST and chronic myeloid leukemia patients was reached with the Central American country’s government July 10, following advocacy efforts by Novartis Pharmaceuticals, Alianza GIST and [...]
Alianza GIST and Oncoguia have formalized a new partnership to work together to benefit GIST patients in Brazil. The first goal of this partnership is to identify GIST patients in the different regions of [...]
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.
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 [...]
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.
The Life Raft Group will be marking a milestone at Life Fest 2012: Celebrating 10 Years of Dedication on November 9 to 11 at the Red Rock Casino in Las Vegas. We are at a [...]
Your friend has been diagnosed with cancer and now suddenly you must deal with this new dynamic in your relationship. This new change of having a serious illness can make you unsure how to act.
