Organizations Filed Purposes:
THE MISSION OF THE GORLIN SYNDROME ALLIANCE (GSA) IS TO THOUGHTFULLY SUPPORT, COMPREHENSIVELY EDUCATE AND AGGRESSIVELY SEEK TREATMENTS AND A CURE FOR BASAL CELL CARCINOMA NEVUS SYNDROME, ITS MANIFESTATIONS AND SPORADIC BASAL CELL CARCINOMAS.
IN 2019, THE GORLIN SYNDROME ALLIANCE EXPANDED ITS REACH AND ENGAGEMENT WITH PATIENTS AND THE RESEARCH COMMUNITY. WE HOSTED A NATIONAL CONFERENCE IN JUNE 2019 IN PHILADELPHIA WHERE OVER 105 PEOPLE ATTENDED COMPRISED OF PATIENTS, CAREGIVERS, FACULTY, PHARMA EXECS, AND STAFF. SIXTY PERCENT OF THOSE AFFECTED WITH GORLIN SYNDROME HAD NEVER ATTENDED A NATIONAL CONFERENCE BEFORE. THE UNIFYING BOND WAS THE SAME FOR EVERYONE - SUPPORT, EDUCATION, AND CONNECTION. EXPERTS IN GORLIN SYNDROME PROVIDED LECTURES AND ANSWERED QUESTIONS FROM PATIENTS, AND FAMILIES INTERACTED WITH EACH OTHER, HELPING TO ALLEVIATE THE FEELING OF BEING ALONE WITH A RARE DISEASE. THE CONFERENCE PROMOTED A COLLABORATIVE ENVIRONMENT FOR PATIENTS AND INDUSTRY TO WORK TOWARDS THE COMMON GOAL OF FINDING BETTER TREATMENTS.
GSA ALSO LAUNCHED A FELLOWSHIP PROGRAM THROUGH STANFORD UNIVERSITY TO PROVIDE VALIDATION OF THE PATIENT INFORMATION BEING COLLECTED THROUGH THE NATIONAL PATIENT REGISTRY.
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 |
|---|
| Julie Breneiser | EXEC DIRECTOR | 32 | $14,423 |
| Michael Rainen | TRUSTEE | 1 | $0 |
| Lisa Tack | TRUSTEE | 1 | $0 |
| Jenni Werkmeister | TRUSTEE | 1 | $0 |
| John Wood | TRUSTEE | 1 | $0 |
| Sam Breneiser | TRUSTEE | 1 | $0 |
| Roni Rubenstein | SECRETARY | 1 | $0 |
| Kevin Gullatt | TREASURER | 1 | $0 |
| Meredith Weiss | PRESIDENT | 4 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202013219349318906_public.xml