The Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare diseases, through patient-powered research, education and empowerment, and global advocacy efforts.
Other Programs Supported by The Life Raft Group:
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 GIST 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.
Update your Patient Registry Info.
Join The Life Raft Group.
Current GIST Clinical Trials.
Search the GIST Specialist Database.
Dr. Monica Anderson
Diagnosed in 2012 with Adult GIST.
Bella Rocco
Diagnosed in 2009 with Pediatric
(SDH-deficient) GIST.
HELP US SAVE LIVES
The Life Raft Group is a community and it is up to all of us to make a difference. There are many ways to help. We always need patient tissue and data in our GIST patient registry. Volunteering your time or making a monetary donation also helps us drive research forward and save lives.
News
Our Decision to Enter Hospice
I’ve been thinking a lot about writing this article. The last thing I want to do is cause worry or pain to anyone reading this. Then I thought of all the people who could possibly benefit in the future from knowing ahead of time what we didn’t know at the time we needed to know it.
10 things you need to know about hospice
1. Comfort is the goal of hospice – Many people think entering hospice is “giving up”, but that’s not true. Hospice is where you go to live comfortably with issues that are no longer in your control. The nurses and staff of hospice are there to assist you and your family in your own home, and are available 24 hours a day, seven days a week if needed.
New Blood Testing Technology May Be Effective in Detecting Mutations
A new blood testing technology may lead to major changes in treatment of Gastrointestinal Stromal Tumors. In a study presented in April by Dr. George Demetri of the Dana-Farber Cancer Institute at the American Association for Cancer Research annual meeting, the blood test was shown to be more effective than traditional biopsies in identifying secondary mutations in GIST.
Carrie Broussard and Her ‘Little Brave Warrior’
Carrie Broussard gave birth to a healthy baby boy on May 1, after finding out she was pregnant in the midst of treatment with Gleevec. She named him Caelum, which in the Celtic origin means ‘brave warrior’ and in the Australian origin means ‘a gift.”
GIST patient shares her experience with Hospital
LRG Global Relations Coordinator Piga Fernández Kaempffer, a GIST patient, gave a conference about her own disease, drawing the attention of professionals, who carefully listened as she shared with them from her perspective the evolution of this pathology.
Rodrigo Salas encourages universities to discuss GIST and other rare diseases
Rodrigo Salas, the President of Fundación GIST México, participated in the XVL Ordinary Session of the Mexican Academy of Faculties of Medicine on April 19
Marathon Brings GIST Awareness to Richmond, VA
The numbers of marathon walkers, runners and spectators who gathered in support of Dana Pearson’s GIST fundraiser in Virginia was both heartwarming and astonishing.
Ralph Farmer: coach, optimist and ‘bait loader’
Ralph Farmer of Greenwood, Indiana, passed away on April 20, 2013, following a courageous battle with GIST.
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
PARTNERS & AFFILIATIONS
