The Werners – Finding the New Normal Living with Wildtype GIST
Bryce Werner was a regular middle-schooler living an average 12-year-old life in Pennsylvania when suddenly everything was thrown wildly left of normal by a GIST diagnosis.
LRG Presents Poster at CTOS, 2017
Dr. Jason Sicklick and Norman Scherzer co-present poster at 2017 CTOS meeting. Norman Scherzer, Executive Director of The Life Raft Group, recently co-presented a poster at the 2017 CTOS (Connective Tissue Oncology [...]
New Horizons – SDH Deficient GIST
Dr. Suzanne George, Co-Clinical Director, Center for Sarcoma and Bone Oncology, Dana Farber Cancer Institute presents at New Horizons GIST Meeting in Wayne, NJ on Oct. 2, 2017.
Global GIST Advocates Convene at LRG Headquarters
The Life Raft Group had the pleasure of hosting the global New Horizons GIST meeting this year in our Wayne, New Jersey office. This international meeting traditionally gathers global GIST advocates with the shared [...]
15th Pediatric and Wildtype Clinic Provides Support and Education
The 15th Pediatric and Wildtype GIST Clinic was recently held at the National Institute of Health in Bethesda, Maryland on July 5 - 7, 2017. The Clinic is a collaborative effort between clinicians and [...]
14th NIH Pediatric and Wildtype GIST Clinic Convenes
If you have a mutation of any of the SDH subunits (a,b,c, or d), the next important question to ask is whether or not it is a germline mutation. (So far, data has indicated that 80% of SDH-deficient tumors are germline). The term "germline" means that the mutation is present in every cell of your body. Germline mutations are hereditary, and can be passed on to your children. For this reason, genetic testing and counseling could be informative for parents, siblings and other family members. If a family member tests positive for the mutation, this does not mean that they will get GIST.
LRG Research Team Meets in Cleveland
In early May, the LRG Research Team held a two-day in-person meeting in Cleveland, Ohio, at the Cleveland Clinic, where I conduct my research. Two primary aims of the meeting were to work on [...]
On the road with Milly: Toto, We’re Not in D.C. Anymore!
Hi friends, It's time to begin the second leg of this super trip. So with a heavy heart and a heavier suitcase we bid goodbye to OVAC Lobby Day and Washington D.C. That's right- we! [...]
Cancerversary 10 Years – Josalin Dunn
Josalin Dunn is celebrating her ten year cancerversary. “Staying positive about my cancer isn’t always easy,... but I keep reminding myself that there are others who have it worse. I am blessed!”
Developing GISTKids.org
During the Life Raft Group Life Fest 2014, a panel of young GIST patients and family members gathered around a table to discuss ideas for advocating for SDH-deficient and wild type GIST. The group [...]