2008 Executive Director's Report

By Norman J. Scherzer
LRG Executive Director

The year 2008 witnessed the continued evolution of GIST patients transitioning from passive recipients of treatment to informed patients and caregivers, determined to assume greater responsibility for the management of their medical care and survival. 2008 Accomplishments To help the patient community become better informed, the Life Raft Group launched a series of sophisticated initiatives:

● We hosted our fourth Life Fest Meeting in September in Chicago, bringing together the patient and medical professional community.
● We completely redesigned our Life Raft Group website in order to make information retrieval much more efficient.
● We continued to link patients around the world to treatment and support resources within their native countries and native languages through our growing Global GIST Network.
● We expanded our increasingly creative outreach in various ways. We amplified our presence in the world of Web 2.0, started a campaign to find out exactly what a cure for cancer would mean to LRG members and the general community, and initiated an online Spanish Speaking social network for GIST patients and their families.
● We created a new and comprehensive clinical trials database to provide both patients and physicians with the most up-to-date listing in the world for finding GIST related clinical trials.
● We created and hosted a series of webcasts on such topics as Familial GIST, Pediatric GIST, navigating clinical trials, the LRG Dosage Study and being a caregiver. Equally as important, we gained the ability to archive these webcasts so that they can be viewed at any time by anyone.
● We composed an array of new educational pamphlets for the GIST community on such topics as: “Living Well with Side Effects,” “Financial and Logistical Assistance for GIST Patients,” “Managing your GIST Care,” “Email Community: Frequently Asked Questions” and “Mutational Testing.” In addition, our GIST informational pamphlet became available in two additional languages, Hebrew and Urdu.

To help the GIST patient community to survive:
● We entered our third year of grant support for our world class research team, which in 2008 expanded to ten scientists from the United States and Europe. In October, we brought together our entire team for a meeting in Portland, Oregon to discuss their progress in implementing our strategic plan to find and overcome GIST treatment resistance, as well as to discover new drugs to prevent any resistance at all.
● We began networking with biotech and other organizations to plan more effective clinical trials, especially for drugs that could be life-saving in the GIST community.
●We shared data that was drawn from our Life Raft Group Patient Registry concerning the relationship between the actual dosages of Gleevec that patients were prescribed (as opposed to their starting dosage) and both progression-free and overall survival rates. In March, we once again alerted the patient and medical communities about our concern that many GIST patients are being underdosed.
● We finally saw the culmination of our extensive efforts to create a center of excellence for Pediatric GIST patients in June. The opening of a specialty clinic for these patients by the National Institutes of Health at their facility in Bethesda, Maryland was momentous for both the LRG and the Pediatric GIST community.

2009 Objectives

Despite our ever-growing collection of accomplishments combined with the valiant battles of GIST patients, we are still strong believers that even one loss is one too many. Our major goal this year is to continue to address our two-prong strategy to improve patient survival.
• First, we intend to dramatically intensify our efforts to ensure that physicians understand and apply the very latest information for treating GIST. This includes routine mutational testing, a commitment to treat those patients with exon 9 mutations with higher doses of Gleevec and routine plasma level testing to help determine patient compliance levels and possible treatment for underdosing.
• On the research front, we intend to continue to fine-tune and expand the efforts of our research team, including their next planned meeting in Boston in March, and to develop new ways to improve the speed and efficacy of clinical trials. You can read more about plasma and mutational testing in back issues of the LRG newsletter.

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