Our mission is to enhance the survival and quality of life for people living with GIST through patient-powered research, education and empowerment, and global advocacy efforts.
PATIENT
Leverage patient perspective to drive innovative solutions in cancer research.
POWERED
Educate and empower patients to take a larger role in their care.
SCIENCE
Accelerate research outcomes through collaborative efforts.
FOR LIFE
Increase access to effective treatments worldwide.
Real World Evidence In Action
Traditional models for cancer research have resulted in many breakthrough treatments for patients, but it is not enough. The LRG’s approach to research through real world evidence, relies on timely, accurate data from the patient’s perspective, with patient survival as the primary objective.
RECENT LRG DATA
Did you know that GIST is actually a family of cancers? Learn more about the science of GIST.
Dr. Monica Anderson
Diagnosed in 2012 with Adult GIST.
Marc Wasserman
Diagnosed in 2006 with Adult GIST.
Bella Rocco
Diagnosed in 2009 with Pediatric
(SDH-Deficient) GIST.
The LRG and NIH Collaborate on Virtual Tumor Boards to Review Challenging Cases
In this issue of LRG Science, we highlight the power of collaboration in medicine with a recap of the Virtual Tumor Board co-hosted with the NIH. Due to the pandemic, The Life Raft Group was asked to organize a Virtual Tumor Board to assure that challenging cases were presented in order to help the patients and their treating physicians develop an effective treatment plan.
Partnership for Survival – Treating the Rarest of the Rare
Our Rare Disease Day offering is a whitepaper titled 'Partnership for Survival – Treating the Rarest of the Rare' detailing how a collaboration with the NIH has become a model for other advocacy groups and researchers.
Night to Fight Cancer Goes Online for 2021
For the past 16 years The Life Raft Group has held its annual fundraising event Night to Fight Cancer hosted by Jerry Cudzil and Matt Knopman in NYC. Sadly, due to the COVID-19 Pandemic we made the hard decision to cancel this fundraising event. Instead we held it online with much success.
LRG Webcast Series: Finding Biomarkers that Cause GIST: From Research to Clinical Application
Dr. Lori Rink, Fox Chase Cancer Center, and Dr. Inga-Marie Schaefer, Brigham & Women’s Hospital, are two researchers who are making discoveries in their respective laboratories to uncover the unique biomarkers in GIST that will be future drug targets.
Calling All GEMs!
Become a GEM today! Help us continue our programs and services for GIST patients by giving a monthly recurring donation. Every little bit helps us to further research and support GIST patients and caregivers.
Heroes of Rare Disease: The 2021 Rare Impact Awards
Dr. Jason Sicklick, Blueprint Medicines Among Honorees Released 2/23/21 by NORD The National Organization for Rare Disorders (NORD®) announced this year’s [...]
Cupcake Records Honors Lorie (Skelton) Perry
Lorie (Skelton) Perry was a GIST patient who passed away on November 11th, 2020. She was known to her family for many things. Among them were her warmth, her willingness to help others, and her talents as a baker. Her family wanted to find a way to honor her memory with a fundraiser.
Resources on Pregnancy & GIST
In our LRG community, we’ve seen many examples of GISTer family planning but also women who have found out they had GIST while they were pregnant. Here are some helpful resources
The LRG Welcomes Young Jae Kim as Our Newest Liaison
The Life Raft Group is pleased to welcome Mr. Young Jae Kim (YJ) as the new LRG representative (liaison) in our global network!
GLOBAL PARTNERS
