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.
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.
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 [...]
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 [...]
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 Jim Hughes, LRG Clinical Trials Coordinator, and Pete Knox, LRG Special Projects Coordinator The 2011 Connective Tissue Oncology Society (CTOS) conference was held in late October this year in Chicago. If the meeting had a GIST [...]
“I learned a lot and feel so much better having the NIH team as an additional resource, “said LRG member, Anne Pacifico.
Bayer initiates a randomized Phase III trial of Regorafenib in GIST: On January 10, 2011 Bayer Healthcare in Berlin, Germany announced the initiation of a randomized phase III trial of Regorafenib (BAY 73-4506) for Gastrointestinal Stromal Tumor patients.