Newsroom

Member Story – Janice Gabriel

I traded in uniforms and business attire for comfort clothes. I could no longer keep pace with the meetings and travel commitments of my job. My travel now includes only visits to Dana-Farber and my time away from home is dictated by my energy level, nausea, diarrhea and heartburn. My appointments to get my hair done, a manicure, pedicure and facial have been replaced with appointments with my local oncologist for blood work, ultrasounds, etc., as well as counseling sessions.

By |2019-09-20T13:52:02-04:00September 11th, 2012|Member Stories|
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GIST Member Story – Donnie Ray Chadrick Jr.

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.

By |2019-09-20T13:51:29-04:00September 11th, 2012|Member Stories|
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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|
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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|
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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|
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The Life Raft Group
155 US Highway 46, Suite 202
Wayne, NJ 07470 USA

Phone 973-837-9092
Contact us by email

The Life Raft Group is a 501 (c)(3) non-profit organization (tax id: 82-0547746) providing support through information, education, and innovative research to patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor). View our 990 Form here

The information provided on the LRG site is designed to support, not to replace, the relationship that exists between a patient/site visitor and his/her physician. Read our Privacy Policy

 

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The LRG website is dedicated in perpetuity to the memory of Mary S. Golnik.

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