For patients with GIST (Gastrointestinal Stromal Tumor)

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

2. Announcement A cure for all cancers has just been discovered

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

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

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

6. 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

7. 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

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

9. 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

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

11. 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

12. 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

13. 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

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

15. LRG Research Approach We are creating a new research paradigm

16. 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

17. 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

18. 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

19. Our MissionIs Survival