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