The Life Raft Group (LRG) is at a turning point in its remarkable history as a patient advocacy organization for those who have been diagnosed with Gastrointestinal Stromal Tumors (GIST). We have reached a milestone, our 10-year anniversary, and it’s been a wonderful journey with a community of patients, medical professionals and scientists who year by year have grown in knowledge and shown amazing courage in their battle with this rare disease. From our humble beginnings as a start-up nonprofit, the LRG has become an essential companion to those with GIST, and a leader among cancer patient organizations.
Our journey has been marked by innovations and achievements, including a comprehensive Patient Registry and GIST Collaborative Tissue Bank that provide valuable data for research, the formation of our own team of scientists working collaboratively on a cure for GIST, new educational and support programs , successful webcasts, a cutting-edge newsletter and the emergence of scores of local chapters.
The Life Raft Group celebrated Ten Years of Dedication at Life Fest 2012 on November 9-11, at the Red Rock Casino in Las Vegas, Nevada. On Friday night, November 9th Life Fest began with a gala event. The evening featured a look back at the LRG’s achievements over the last 10 years as well as provide a glimpse of where we are heading in the future.
We recognized those who contributed to the fight against GIST, honoring a select group from the patient, medical, scientific and pharmaceutical communities who have furthered the understanding and treatment of GIST and made a difference to the survival of patients. These honorees were spotlighted for their accomplishments at the gala and inducted into the GIST Hall of Fame.
The celebration continued throughout the weekend with other key awards.
As a part of the event, the LRG also published a 10-year anniversary commemorative program highlighting our achievements. If you are interested in receiving this Program, please contact email@example.com.
More than anything else, Life Fest 2012 offered an opportunity for the GIST community to come together to celebrate our progress and move toward finding a cure.
Dr. Jonathan Trent
Humanitarian of the Year
Dr. Michael Heinrich
Clinician of the Year
Global Award of Excellence
Allan Tobes Volunteer of the Year
Emilie Van Karnebeek
Arnie Kwart Philanthropist of the Year
Dr. Brian Rubin
Jeroen Pit Science Award
Patient Outreach Award
GIST Hall of Fame Honorees
The Baldor Family
Dr. Jerzy Lasota
Dr. Markku Miettinen
Norman J. Scherzer
The Max Foundation
Mutational & Plasma Testing Presented by Jerry Call
GIST: From Pathology Puzzle to Targeted Therapy by Michael Heinrich M.D.
LRG's Patient Registry Presented by Roberto Pazmino
Update on LRG Research Group by Brian Rubin, M.D.
Life Fest 2010
Thanks to everyone who attended Life Fest 2010 on June 25 through 27 at the Hyatt Regency in Jersey City, New Jersey! Keep a look out for more information from Life Fest.
Friday night agenda:
5:00 - 6:15 PM
Welcome and Introduction
6:15 - 6:30 PM
6:30 - 6:45 PM
Humanitarian of the Decade Awards
6:45 - 7:30 PM
7:30 - 7:45 PM
7:30 – 8:30 PM
Dr. George Demetri Honorary Chair
8:30 – 8:45 PM
Inaugural Induction to GIST Hall of Fame
8:45 – 9:45 PM
Debut of “Life Raft” ~ A song by George Teren
9:45 – 9:50 PM
9:50 - 10:00 PM
Friday night gala- GIST 2010: A Decade of Difference
It has been a remarkable decade for the GIST community as scientific discovery, medical treatment and drug development have put GIST at the cutting edge of cancer treatment and care. Between 2000 and 2010 GIST has gone from being a misdiagnosed rare cancer, with only a 5% response to treatment, to one of the best understood cancers, where patients can now expect an 85% response to treatment.
2010 marks the tenth anniversary of a breakthrough in GIST treatment as the first group of patients to receive a drug to treat metastatic GIST will reach their 10-year survival benchmark. On Friday night, Life Fest 2010 will open with a gala event, GIST 2010—A Decade of Difference, hosted by honorary chair for the evening, GIST specialist, Dr. George Demetri of Dana-Farber Cancer Insitute. The evening will feature a look back at the key scientific and medical milestones over the last ten years and a look forward to the most promising treatments and discoveries on the horizon.
For this occasion special recognition will be awarded to a select group from the GIST patient, medical, scientific and pharmaceutical communities who have contributed not only to the understanding and treatment of GIST, but whose accomplishments have made a difference to the survival of GIST patients. These honorees will be spotlighted for their accomplishments at the gala and inducted into the GIST Hall of Fame.
The Humanitarian of the Decade Award, recognizing the most outstanding accomplishment over the last 10 years will be given jointly to Dr. Dan Vasella, CEO of Novartis Pharmaceuticals and Dr. George Demetri, for their roles as leaders in GIST research and clinical care and for personally being responsible for saving the lives of countless GIST patients.
Saturday/Sunday- Life Fest 2010
Every two years, the LRG holds Life Fest, a weekend full of workshops and general sessions aimed at educating and supporting GIST patients and caregivers. Some past sessions and workshops have included GIST 101, Coping for Caregivers, Accessing Treatment, Side-Effects Management and GIST Survival Strategies. You can view this year's agenda here.
This year we have a few extra goodies in the works:
GIST Clinician of the Year- Ever wanted to tell the world what a wonderful doctor you have? Now's your chance. Help us choose the GIST Clinician of the Year. Fill out a nomination form explaining why your doctor or nurse should be chosen and if yours is the winning entry, you win a free trip to Life Fest!
Tree of Life-This tree represents all the good things that have come into your life since your GIST diagnosis. You hear many stories in the LRG about survivors getting to see a grandchild that they never thought they would, finally going on that European vacation with their spouse, or even simply getting to retirement. This is your chance to tell the world just what this time has meant to you. For those with a loved one that has passed on, don’t feel as though you can’t participate. Feel free to fill out a Tree on their behalf.
Booking a room for Life Fest: Rooms can be booked under the special Life Raft Group rate of $129+ tax in two ways.
If reserving a room by phone: Call 1-800-233-1234 and ask for a room for the Life Raft Group event at the Hyatt Regency in Jersey City. Tell the person assisting you that the code is G-LRAG.
If reserving a room online: Go to http://www.jerseycity.hyatt.com You can book it on the main page, as well as the "Rooms & Rates" page. Enter the code G-LRAG in the box labeled "Group/Corporate#
Dr. Bruce Brockstein
*Presentation was created by Dr. Jonathan Trent of MD Anderson
LRG Research Evolution
LRG Director of Planning and Development
LRG Research Team Update
Dr. Brian Rubin
The Cleveland Clinic
Karen McDougall, Novartis
Dr. Brian Rubin, The Cleveland Clinic
Tom Overley, LRG General Counsel
Side Effects Management
Donna Mazzone, RN
Lutheran General Hospital
*Presentation was created by Pat Neal, RN of MD Anderson
LRG Executive Director
Nutritionist, GIST survivor
Clinical Trials Explained
LRG Clinical Trials Coordinator
New Treatments Update
LRG Clinical Trials Coordinator
GIST Survival Strategies
LRG Science Coordinator
Hyatt Regency O'Hare
9300 Bryn Mawr Avenue,
Rosemont, Illinois, USA 60018
Life Fest 2008 Agenda
Connecting the Dots
Executive Director Report
GIST clinical trials
LRG Research Update
Pediatric GIST-The New (or forgotten) Kid on the Block
Side Effects Management
Dallas Adam’s Mark