April 2012
- Breaking News update: TDM renews plasma testing
- Wildtype GIST & SDH: what to know
- Dating with GIST: the who, what, when and just plain how? (Part 2)
- Behind the walls of Brigham & Women's: Fletcher's lab
- April 2011 clinical trials update
- Healthcare 2011 and beyond: Part 2
- State of the GIST Community Part 2: What do we know about your diagnosis?
- Safford’s Valentine’s concert brings in over 15K
- Holiday Fundraising campaign raises over 53K!
- Italian GISTers hold 4th national meeting
- Welcome to Janeen Ryan!
- MD Anderson and Memorial Sloan-Kettering among top cancer centers in US News & World Report’s ‘best’ list
- FDA too rigid in review of drugs for critically ill
- Tate was beloved mother, grandmother, artist and friend
- Brave GISTer lived life “Texas big”
- LIVESTRONG Cancer Navigation Center opens in Austin
- Calendar
April 2011
- Breaking News update: TDM renews plasma testing by Jerry Call On April 21, 2010, the U.S. Food and Drug Administration (FDA) issued a warning letter to Novartis criticizing its promotion of blood level testing on its CML and GIST Alliance websites. As of September 30, 2010, Novartis terminated the CML and GIST Alliance programs which it had contracted with TDM Pharmaceutical Research, LLC. Since then, the Life Raft Group has been working tirelessly behind the scenes to try and resume this critical testing procedure...
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Wildtype GIST & SDH: what to know
by Jennifer Wright
Wildtype GISTs are tumors that have a protein called “KIT” on their surface but do not have mutations in KIT or PDGFR like regular GIST tumors do. Wildtype GISTs are not treated with imatinib or sunitinib very often because these drugs are most active on tumors with KIT or PDGFR mutations.Most children and younger adults with GIST have the wild-type.
- Dating with GIST: the who, what, when and just plain how? (Part 2) by Erin Kristoff “When breaching the subject, I do it casually and pay attention to reactions. Since most of my symptoms are food based, I’ll turn down a dessert and casually say ‘I’ll get sick if I eat that', either on the first and second date. They will invariably ask why, and the door is opened..."
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Behind the walls of Brigham & Women's: Fletcher's lab
David Josephy is the President of Life Raft Group Canada, a member of the LRG Science Team, and the brother-inlaw of GIST patient Elsie Hernandez. David is a biochemistry professor at the University of Guelph, in Ontario. Since September, he has been on sabbatical leave, working as a researcher in the lab of Dr. Jonathan Fletcher, a renowned GIST researcher and leader of the Life Raft Group Research Team. We asked David to tell us about his experiences working at Brigham and Women's Hospital in Boston.
- April 2011 clinical trials update by Jim Hughes
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Healthcare 2011 and beyond: Part 2
by Diana Nieves
In our last newsletter, we briefly explained Medicare, in particular Part D and the “Donut Hole”. This article will cover other resources available to you to cover your prescription drugs when Medicare Part D just isn’t enough or if you do not qualify for Medicare for other than financial reasons.
- State of the GIST Community Part 2: What do we know about your diagnosis? by Magda Sarnas One of the most common questions GIST patients ask of the Life Raft Group is how many cases of GIST out there are like mine? With a total of 1,279 GIST cases reported to us as of December 31, 2010, in the LRG’s Patient Registry, one would think all GIST patients would be in the same boat. However, it is not as easy answer as you may think.
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Safford’s Valentine’s concert brings in over 15K
by David Safford
The Valentine’s Day Piano Concert with Anthony Padilla, cosponsored by the Life Raft Group and Columbia Basin College was a tremendous success with 140 guests enjoying a romantic evening of music.
- Holiday Fundraising campaign raises over 53K! Wait till you find out who's going to be singing like a canary on May 7!
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Italian GISTers hold 4th national meeting
by Gabriella Tedone
A .I.G.’s (Associazione Italiana GIST) fourth national meeting was held at Fondazione IRCCS Istituto Nazionale dei Tumori (INT) in Milan on February 26, 2011. The focus of the meeting was, “What is GIST and How to Treat It.”
- Welcome to Janeen Ryan!
- MD Anderson and Memorial Sloan-Kettering among top cancer centers in US News & World Report’s ‘best’ list Every year, the US News & World Report releases their “Best Rankings” list, featuring the best in education, hospitals, business and others. The list of top cancer hospitals is one such list.
- FDA too rigid in review of drugs for critically ill Scott Gottlieb has fired a shot across the FDA's statisticalconfidence bow. The former FDA Deputy Commissioner, using the Wall Street Journal as his command post, charges the regulator with "steadily disregarding" the provisions of the FDA Modernization Act...
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Tate was beloved mother, grandmother, artist and friend
Born in Marion, NC, she was a daughter of the late Weldon and Pearl Bowman. She was a devoted mother and grandmother, and a member of St. Andrews Presbyterian Church.
- Brave GISTer lived life “Texas big” Rick was a Technician for Midas for eight years and for the last year and a half he worked for Gates. He loved fabricating show trucks. He was an ASE Master Certified Technician.
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LIVESTRONG Cancer Navigation Center opens in Austin
The Life Raft Group is always on the lookout for anything that may be helpful for people dealing with cancer. When we see that other organizations are providing services that may help the GIST community, we like to share that information for everyone's benefit.
- Calendar

