For patients with GIST (Gastrointestinal Stromal Tumor) Life Raft Group

Announcement A cure for all cancers has just been discovered

Therefore Will all oncologists, cancer pathologists, radiologists and researchers please leave the room

Retraining A table has been set up outside the room with applications for retraining you as accountants and plumbers

Food for Thought Can we distinguish between acts of outrage that make us feel good and acts of intervention that actually change something

Survival History of GIST Prior to the summer of 2000 –Most GIST patients were misdiagnosed –The only effective treatment was surgery –When surgery was no longer an option death was inevitable The summer of 2000 brought Gleevec, C-Kit testing, and Hope The appearance of resistance is a particularly cruel setback Our primary focus now is to find ways to overcome this resistance

Evolution of the Life Raft Group Informal Chat Group 501-C-3 Non-Profit Organization Extraordinary Growth From Support and Information to –Research –Advocacy –Media and Outreach –New Initiatives

Our Mission Is the Survival of patients with GIST (Gastrointestinal Stromal Tumors)

Our Strategy To think smart enough to leverage our small numbers and to overcome the rarity of GIST To use the combination of our own research, and the ability to publish in our newsletter and on our website, to carve out a seat at the decision making table

Why The Life Raft Group Conducts Its Own Research Timeliness Patient Relevance Survival

History Of Life Raft Group Research Gleevec Response Rates: First to report Gleevec Effectiveness for GIST patients Gleevec Side Effects: –Designed Severity Rating Scale for Patient Self Evaluation –First to report that Side Effects Got Better Over Time –First to report Gender Differences in Side Effects

History Of Life Raft Group Research-pg.2 Pediatric GIST: First to Establish a Pediatric GIST Database Gleevec Resistance: –Introduced Evaluation of Actual Dosage as Opposed to Intended (Starting) Dosage –Evaluated Relapse Amongst Metastatic GIST Patients –Determined that there Was a Relationship Between Dosage and Relapse

New Research Initiative We intend to find the reasons for GIST treatment resistance and the means to overcome them We have created a two million dollar start up research project to help achieve this

LRG Research Approach: Our Mantra Excellence vs. Consensus Collaboration vs. Competition

LRG Research Approach We are creating a new research paradigm

Traditional Research Approach Donate money to an institution in the name of research, perhaps with a specific disease designation General call for proposals from the research community

LRG Research Approach Create a research team based upon value added expertise and synergy Develop a strategic plan focused upon overcoming treatment resistance Select priority research project leaders Award them an annual stipend Direct funding to implement the strategic plan

Add A Supportive Grants Structure Cap indirect costs Streamline the paper work Remove red flags that could slow down the process Strengthen and fast track the process with accelerated and supplemental funding

Our Mission Is Survival