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

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