Pediatric & SDH-Deficient GIST Consortium Update
Setting the Pace for the Future In July of 2018 at Life Fest, The Life Raft Group brought together a team of pediatric & SDH-deficient GIST experts for a symposium focused on this rare [...]
The Life Raft Group Announces an Innovative Consortium to Accelerate Cancer Research at the Biden Cancer Summit
WAYNE, N.J. and WASHINGTON, D.C. (September 21, 2018) - The Life Raft Group announces at the Biden Cancer Summit a new initiative to strengthen and advance research for effective treatments of a rare subset of [...]
A New Lifeline – The Pediatric & SDH-Deficient GIST Consortium
The Life Raft Group is excited to cast a new lifeline to increase the quality of life and survival rates of Pediatric and SDH-Deficient GIST patients worldwide through the establishment of a collaborative research consortium. The Pediatric & SDH-Deficient GIST Consortium, unveiled today at the Biden Cancer Summit, supports patients and caregivers at a critical time to share data, tissue, and resources to address the urgency of cancer treatment.
Life Fest Pediatric/SDH Deficient GIST Track Provides Wealth of Information
The 2018 Life Fest Meeting was held in Miami on July 13 - 15 and was attended by 140 patients, friends, family and caregivers. This was a truly international event, with participation from 20 [...]
NIH Clinic Combines Research, Knowledge, and Hope
I had the pleasure of attending the 15th Pediatric and Wildtype Clinic along with Becky Owens from GIST Support International as patient advocates. The Clinic was held at the National Institute of Health in [...]
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.
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! [...]
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 [...]
Alia Coleman: To Know Fear and to Overcome It
Alia Coleman, a Pediatric GISTer, has known fear, and works at overcoming it daily. She is an inspiration to us all. This video was used as part of a presentation on fearlessness at the [...]