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October 2010

Project D Day: our greatest hope for a cure

For the past four years, the LRG Research Team has been building a strategy that will lead to a cure for GIST and there has been progress on a broad number of fronts including:

 The creation of a comprehensive blueprint for understanding the mechanisms of treatment resistance that develop following the failure of single drug regimens like Glivec and Sutent

 The development of mechanisms to test new drugs in the laboratory, including genetically engineered mice that transmit particular forms of GIST from generation to generation and immortal cell lines (that can be replicated indefinitely) against which novel drugs can be tested

 Pre-clinical screening of drugs to evaluate both their potential efficacy and toxicity.

 The creation of a comprehensive GIST tissue bank housed at Stanford University which allows significant numbers of researchers to access and test this rare tissue as well as to access the clinical histories of the patients that is maintained by the Life Raft Group in its Patient Registry

 The critical investigation into understanding why a small number of GIST cells may survive an otherwise successful drug treatment and methods of reverting these cells into a state in which they may more easily be killed.

 Authoring over 150 research publications.

Recently, a Dutch GIST patient named Jeroen Pit, confronting his own struggle to overcome treatment resistance, was investigating the best way to donate to GIST research and perhaps help save his own life. After consulting several leading GIST researchers, the patient decided that the Life Raft Group Research Team gave him the best chance for finding a cure. He raised 2 million dollars and challenged us to accelerate our efforts to keep him and other GIST patients resistant to Gleevec and Sutent (the only two FDA approved drugs for this cancer) alive (Learn more about Jeroen Pit). We added one million dollars and the result is the aptly named D Day Project. Like that extraordinary day in 1944, when the Allied forces stormed the beaches of Normandy, our attack on GIST treatment resistance has reached an historic opportunity for success.

Recent decreases in the costs of genotyping combined with the largest privately- funded GIST research initiative in history has given us the best opportunity to date to find a cure for GIST. We have in place an initial three million dollar war chest over an 18 month period and a strategy that will optimize our chances for success.

The Plan

The LRG research team will continue to share data and information and maintain its collaborative approach to research. Progress reports will now be shared every three months instead of every six months. The level of determination has never been greater. The D Day Project’s research plan is organized into four distinct project areas: sequencing, gene knockdown, drug screening and validation. It is believed that these four distinct areas hold the key combination to unlocking the cure for GIST (See more about these project areas below). Each of these complex areas will have a unique team leader to ensure maximum coordination, communication and to assess progress.

Eliminating Overhead

Research Institution Administrative Overhead = 0

As we have an existent contract mechanism in place with each of the LRG Research Team Institutions that conditions our funding on their waiver of administrative overhead rates we plan to extend these contract provisions to this new funding. This will provide for an enormous savings as the typical overhead rates range from 65 percent to 75 percent.

Life Raft Group Overhead = 0

As we have a research support infrastructure in place within the Life Raft Group we will support the planning and implementation of this additional funding without charging any overhead at our end.

The Bottom Line

Instead of writing checks to individual investigators with the simplistic objective of supporting GIST research and hoping for the best, the D Day project is built upon an understanding that researchers will be held accountable for their individual roles in implementing a strategic plan, including a requirement that they report back to us every three months to assess progress and strengthen cooperation. This allows for rapid course-correction, in keeping with the fast-paced world of GIST research.

This is quite unlike traditional methods for funding cancer research, a generally unsuccessful approach that encourages competition instead of collaboration and which rewards publications over increased patient survival. Instead, LRG priorities are set based upon a common strategic plan. Collaboration replaces competition. Accountability is enhanced by individual contracts which require budget reports and progress reports. Communication and coordination is strengthened by requiring that team members share data and information on an ongoing basis.

We believe this D Day project represents the best chance we have ever had for finding the cure for GIST. We have the resources to launch this attack, but we cannot finish it alone.

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