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 [...]
The following are summaries of two of the Wild Type GIST parallel track sessions at Life Fest, 2016, submitted by Rebecca Bensenhaver of GSI International. "I was fortunate to be able to attend Life [...]
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.
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 [...]
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! [...]
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!”
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 [...]
Jayne Bressington, Patient Director of the PAWS-GIST Initiative & Trustee of GIST Support UK The first national Pediatric, Adolescent, Wild-type and Syndromic GIST (PAWS GIST) clinic in the United Kingdom was held on [...]
The Life Raft Group is excited to announce that we will be partnering with the National Institutes of Health to launch the first Pediatric GIST Virtual Tumor Board!* Due to severe funding cuts that reduced [...]
For many years, wild-type GIST tumors were a mystery. In 2007, Barbara Pasini, J. Aidan Carney, Constantine Stratakis and colleagues identified the first mutations in pediatric GIST tumors in a protein called succinate dehydrogenase (SDH). Coding (instructions) for making the SDH protein is contained in four subunits (genes), SDHA, SDHB, SHDC and SDHD. The group, led by Constantine Stratakis, initially reported mutations in three of the four subunits; SDHB, SHDC and SDHD. SHDA remained a mystery.
