Monthly Archives: August 2012


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|

Several GIST clinical trials updated at American Society of Clinical Oncology

By Jim Hughes Here are updates from the American Society of Clinical Oncology conference on three GIST  clinical trials. Panobinostat (HDAC) Phase 1 in 3rd Line GIST: LRG research Team member Sebastian Bauer, MD of Essen University [...]

By |2019-09-20T13:55:31-04:00August 1st, 2012|Clinical Trials, News|

Ten Ways to Fundraise for the LRG

As the Life Raft Group celebrates its tenth anniversary and the achievements within the GIST community over the last 10 years, we are busy planning for the future. Our focus remains the same – to cure GIST and support those people affected by this disease until we do. In addition to the services we currently provide, the LRG is working to develop new programs to support our members while also improving our advocacy initiatives to increase GIST awareness and treatment access. The LRG will also continue to fund our research team who recently completed a two year strategic plan to move forward based on its most recent findings.

By |2019-04-22T09:20:42-04:00August 1st, 2012|Fundraising, News|

How Jasper and I worked together

One patient already contacted us when www.carneytriad.comwas just being launched. We were greatly astonished when a young woman with a complete Carney’s Triad contacted us via our website, as she happens to live only a 25 minute drive from Jasper’s city. What a joy and recognition!! Henriëtte and Jasper met immediately and she went for a second opinion to his own expert oncologist Dr. Winette van der Graaf at Nijmegen.

By |2019-09-20T13:56:22-04:00August 1st, 2012|News|

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|

Identifying novel treatment options by defining molecular mechanisms

Written by Anette Duensing, M.D. Molecular mechanisms can help identify GIST treatment options. GISTs are the most common mesenchymal tumors of the gastrointestinal tract and are caused by activating mutations in the KIT or PDGFRA receptor [...]

By |2019-09-20T13:57:56-04:00August 1st, 2012|News|
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