2007 Mission & Objectives

Mission: The mission of the Life Raft Group (LRG) is to ensure the survival of GIST patients while maintaining the quality of their lives. To accomplish this mission, the Life Raft Group devotes its efforts to four major program areas: Research and Treatment Surveillance, Information & Support, Patient Outreach & Assistance, and Advocacy.

Research and Treatment Surveillance:
Research: We have created a strategic plan to address GIST treatment resistance. We intend to identify the mechanisms of treatment resistance and the means to overcome them. We have established a sophisticated research team and developed a supportive grants infrastructure that will hold each researcher accountable for specific results, redirect resources when research dead ends and supplement them when new needs arise. Along the way, we will create a new research paradigm that will help other patient groups to close the known information gaps to understanding and overcoming treatment resistance.

We conduct our own patient-based research to ensure that we have the most timely and relevant information that GIST patients need to survive. This internal research is designed to provide us with information that is not currently available from clinical trials, either because we are waiting for the trial to reach its research end point and for the researcher to share the information or because the perspective of the trial is just not geared to what patients need to know in order to survive. We cannot completely depend upon the profit drive of the normal drug development marketplace and traditional research funding to ensure patient survival.

A note about Life Raft Group research: Dr. Daniel Vasella, CEO of Novartis described our research as follows: “The Life Raft Group … has provided various people, patients, doctors, investigators with a unique kind of data bank that cannot be replicated anywhere else, not even in patient trials.”

Treatment Surveillance: In addition to our research, we aggressively track new drugs and compounds before they even enter clinical trials for GIST. We seek out and publish clinical trial information in our newsletter and website before any other trial listing service, private agency or government. We then track these clinical trials via patient reports immediately after they begin and evaluate the efficacy and side effects of the new drugs on an ongoing basis. Subsequently, we share this information with patients and doctors through our newsletter and website.

In 2007 we plan:

• To implement the next phase of our strategic research plan at Dana-Farber/Brigham & Women’s Hospital in Boston; Memorial Sloan Kettering in New York City; Oregon Health and Science University/VA Hospital in Portland; Stanford University Medical Center in Stanford, California; Cleveland Clinic Foundation in Cleveland; and Catholic University in Leuven, Belgium.
• To expand our adult and pediatric tissue banks at Memorial Sloan Kettering and Stanford University Medical Center.
• To continue to develop a virtual and physical center of excellence for pediatric GIST.
• Internally we plan:
• To study the relationship between preventive treatment and dosage.
• To study the factors associated with long-term survival on Gleevec.
• To continue to expand our pediatric GIST database, currently the largest in the world.
• To conduct a familial GIST study.

Information and Support: The Life Raft Group provides information and emotional support to more GIST patients and their families than anyone else in the world. Backed by an extensive surveillance program and the maintenance of key databases about treatment options, we prepare and distribute timely and critical information through our website, our monthly newsletter, our internet-based chat facilities, patient pamphlets, membership meetings and sister groups in the United States and around the world. To facilitate access to the best possible treatment, we created and continue to expand an international directory of GIST specialists. Finally, we dramatically impact the recruitment for clinical trials by referring significant numbers of patients to trials that hold some promise.

In 2007 we plan:

• To produce a series of new GIST pamphlets.
• To expand and reorganize our LRG and Global GIST Network websites.
• To initiate webcasts on GIST-related topics.
• To expand the content of our monthly newsletter.
• To launch new foreign language listservs to permit GIST patients to communicate with one another in their own language.

Patient Outreach & Assistance: The Life Raft Group is the only organization in the world that provides real time consultation to GIST patients about treatment options through expertly staffed telephone consultation. Uniquely, we help patients understand how to navigate clinical trials for survival. We provide vital information to patients and their caregivers through our monthly newsletter, our websites, our internet-based chat facilities and our local groups.

In 2007 we plan: 

• To launch a major outreach program to reach more patients in the U.S. and abroad.
• To hold national and international forums with key GIST patient group representatives.
• To target medical providers and pharmacies to reach more patients.

Advocacy: The Life Raft Group is the major advocacy voice on behalf of issues vital to the medical and economic well-being of GIST patients. We have undertaken major initiatives to fight the use of placebos in clinical trials for patients that have no other treatment alternatives, to secure Medicare coverage for oral cancer drugs and to bring new drugs to clinical trials. We have begun to represent the GIST patient in the planning of clinical trials and we continue to represent the GIST patient in a growing number of forums both in the United States and abroad. We directly intervene with pharmaceutical companies, insurance companies, medical institutions and foreign governments to deliver life saving drugs, to help patients gain access to clinical trials and to help patients overcome financial and logistical obstacles to treatment.
A major reason that many key people take a rare cancer advocacy group like the LRG so seriously is that we are able to do our own research and publish it in our own newsletter and website. That is a powerful tool which is permitting us, along with an astute use of networking and the media, to carve out a seat for GIST patients at the decision making table. 

In 2007 we plan: 

• To aggressively address the lack of urgency in implementing new clinical trials and in making drugs available on an expanded access basis.
• To address the issue of high Medicare co-payments for expensive oral cancer drugs.
• To advocate for patients to receive mutational testing.

Accountability
We believe that donations to the Life Raft Group should be totally accounted for. A transparent budget with professional checks and balances and a clear explanation of what we spend that budget on should be clearly defined.
All contributions to the Life Raft Group are acknowledged in writing, as required by the IRS. A copy of the report that we are required to file with the IRS (990) is posted to our website. A detailed operating budget is also posted once it has been approved by our Board of Directors. We retain an independent CPA firm to conduct an annual financial audit and we make copies of this extensive audit available upon request. Finally, we welcome and respond promptly to all questions.
We currently employ a core staff of six full time employees. In addition, we maintain and equip a small office in Wayne, New Jersey at 40 Galesi Drive and support staff travel and professional fees. This core staff is backed by an extensive network of volunteers, including our accountant, auditor, general counsel, database consultant, meeting organizer, website designer, and a LRG volunteer research team consisting of a statistician, bio-chemist and mathematician. We have no full time administrators. Less than ten percent of our resources support our general administration, including our fundraising.