Organizations Filed Purposes:
ENHANCING SURVIVAL AND QUALITY OF LIFE FOR PEOPLE LIVING WITH GIST THROUGH PATIENT-POWERED RESEARCH, EDUCATION, EMPOWERMENT AND GLOBAL ADVOCACY EFFORTS.
ENHANCING SURVIVAL AND QUALITY OF LIFE FOR PEOPLE LIVING WITH GIST THROUGH PATIENT-POWERED RESEARCH, EDUCATION, EMPOWERMENT AND GLOBAL ADVOCACY EFFORTS. THE VISION IS TO CHAMPION PATIENT-POWERED SCIENCE AND DRASTICALLY INCREASE LONG-TERM SURVIVORSHIP FOR GIST CANCER PATIENTS.
RESEARCH: WE FUND AND MANAGE UNIQUELY COORDINATED RESEARCH INITIATIVES THAT ALWAYS KEEP THE NEEDS OF GIST PATIENTS FOREMOST. THE LIFE RAFT GROUP (LRG) CONTINUES TO LEAD A COLLABORATIVE TEAM OF WORLD-RENOWNED SCIENTISTS AND CLINICIANS IN GIST. LRG HAS THE LARGEST GIST PATIENT REGISTRY IN THE WORLD. OUR RESEARCH PARADIGM IS PATIENT-POWERED SCIENCE FOR LIFE, A COMPREHENSIVE APPROACH THAT COMPLEMENTS TRADITIONAL RESEARCH WITH REAL-WORLD EVIDENCE SUPPORTED BY DATA FROM OUR PROPRIETARY PLATFORMS, OUR GIST PATIENT REGISTRY, GIST/PRIME, PROJECT SURVEILLANCE AND SIDEEQ, OUR SIDE EFFECTS MANAGEMENT TOOL.
INFORMATION, EDUCATION, ADVOCACY, OUTREACH & ENGAGEMENT: THE LRG PROVIDES SUPPORT, INTERVENTION, EDUCATION AND CLINICAL EXPERTISE TO GIST PATIENTS, THEIR FAMILIES AND CAREGIVERS. LOCAL SUPPORT IS AVAILABLE TO THE GIST COMMUNITY THROUGH A NETWORK OF LRG STATE LEADERS AND VOLUNTEERS. OUR EDUCATION PROGRAMS ARE OFFERED WORLDWIDE. OUR GIST DAYS OF LEARNING AND OUR BIENNIAL LIFE FEST EVENT GATHER EXPERTS FROM ACROSS THE GLOBE TO BRING THE MOST UP TO DATE INFORMATION ON GIST RESEARCH, EMERGING THERAPIES AND UPDATES ON THE WORLD OF GIST. OUR OUTREACH AND ENGAGEMENT EFFORTS ALSO INCLUDE PATIENT SUPPORT GROUPS, FOCUS GROUPS, MONTHLY WEBCASTS, OUR NEWLY REVISED WEBSITE, ACCESS TO OUR CLINICAL TRIALS DATA BASE AND OUR WORLDWIDE GIST SPECIALIST DATABASE. EXPERT PATIENT TRAINING IS OFFERED TO ALL MEMBERS. OUR ADVOCACY EFFORTS ARE ON BOTH A LOCAL AND NATIONAL LEVEL. PARTNERING WITH OTHER ADVOCACY GROUPS IN THE RARE DISEASE SPACE, WE ADVOCATE FOR MANY ISSUES OF BENEFIT TO OUR PATIENT COMMUNITY.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Norman J Scherzer | EXECUTIVE DIRECTOR | 35 | $125,819 |
| Steve Pontell | TRUSTEE | 1 | $0 |
| Eric Biegansky | TRUSTEE | 1 | $0 |
| Gary Glasser | SECRETARY/TREASURER | 1 | $0 |
| Teena Petersohn | TRUSTEE | 1 | $0 |
| John Poss | TRUSTEE | 1 | $0 |
| Rodrigo Salas | TRUSTEE | 1 | $0 |
| Jim Hughes | TRUSTEE | 1 | $0 |
| Stan Bunn | PAST PRESIDENT | 1 | $0 |
| Jerry Cudzil | PRESIDENT | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202023189349308542_public.xml