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.
COVID-19 – Resources GIST Patients Need
COVID-19 - Resources GIST Patients Need - Please know that the Life Raft Group is here to support you during this Coronavirus crisis. We will continue our daily services during this time and we will be distributing information and messages of hope through all our communication channels.
Patient of the Month for January: John Abrams
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. John Abrams shares his story.
Women in Sarcoma Virtual Gala
At this Virtual Awards Gala, we highlighted women in sarcoma (both medical professionals and patients) who make a difference in patients’ lives, and to inspire the community with their stories and perspectives of women’s role in oncology as well as their personal experiences.
Thank You to Our Newest GEMs!
Our GEM Donor Program has a group of new donors that will help the LRG continue the work we do [...]
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.
GIST & Creativity – Gewelry for GIST with Christine Gonzales
Christine, a former elementary school teacher, is raising three sons with husband Adam, in New Mexico. She doesn’t feel that creativity has always had a place in her life, but teaching elementary school always provides opportunities for innovation and creative thinking so perhaps it’s a matter of perspective.
GIST & Creativity – Art Quilter, Crafter, Teacher Claire Monaghan
GIST happened soon after her first quilt was accepted into a quilt exhibit and after participating in her first holiday craft show last December. Every GIST patient has a unique story about how they were diagnosed and where their journey takes them but Claire can literally credit a recurrence of her sister's ovarian cancer in January as the reason she found her GIST tumor.
GLOBAL PARTNERS
