After two years of planning, toiling, and more planning, the LRG unveiled its redesigned website on January 1 at our same web address: liferaftgroup.org. Finding the balance between providing life-saving information and explaining GIST in a concise, understandable way, has always been a struggle for the Life Raft Group.
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 perilous world of dating can become even more complicated when you are living with cancer. This article is the second in a two part series on dating with a diagnosis of GIST. Part one, which was published in the February 2011 issue of the LRG newsletter featured experiences from three GIST survivors, Jason DeLorenzo, Eric Tan & Estelle Lecointe on the difficulties approaching the subject of GIST while dating. Part two covers tips on approaching the subject, a success story and new ways to meet people.
Yesterday, there were a series of news stories reporting on an article published by Cooke et al inCancer Cell. Unfortunately, the coverage gave misleading information which could suggest that patients should not take Gleevec (imatinib) or Sutent (sunitinib).
EU Cancer Patients Concerns Heard: Cancer Patient Mobility Moves Closer to a Reality. The following article was taken from a European Cancer Patient Coalition press release. A “yes” vote in the European Parliament’s public health committee [on October 27, [...]
This December, I will have been working with cancer patients for six years at the Life Raft Group. I have held their hands in hospital beds, coached them on how to talk with their doctors, stood by their side at the weddings of friends, walked with them through haunted houses and comforted their loved ones when they had nothing left.
By Belinda Ehrlich, LRG Program Associate & Erin Kristoff, Newsletter Editor And the winner is... After careful consideration, the Life Raft Group has chosen the recipient of the GIST Clinician of the Year award – Dr. [...]
When Morty Wagman underwent surgery to remove a gastrointestinal stromal tumour (GIST) in 2008 with his wife Judi by his side, he was faced with a concerning 55 percent chance that his cancer would return. Then, his oncologist told him about Gleevec (imatinib), a treatment that could greatly reduce the risk of his cancer returning, and Wagman felt empowered and hopeful. Today, he and his wife applaud Health Canada for approving Gleevec for patients with this potentially life-threatening condition, at an earlier stage in the disease.
Here, you can register for Life Fest, view pictures, video and presentations from past Life Fests, download a nomination form for GIST Clinician of the Year and download materials for our new project: Tree of Life.
Innovative project will allow GIST researchers worldwide to access GIST tissue linked to patient-provided clinical histories. For more information on the GIST Tissue bank read the official press release.
