Organizations Filed Purposes:
THE WIEDEMANN-STEINER SYNDROME (WSS) FOUNDATION SERVES AS THE CORNERSTONE OF KNOWLEDGE FOR INDIVIDUALS AFFECTED BY THE SYNDROME, THEIR FAMILIES, PHYSICIANS, AND RESEARCHERS. TOGETHER WE ADVOCATE FOR COMPREHENSIVE RESEARCH WITH MEANINGFUL DISCOVERIES AND CONNECT THE WSS COMMUNITY THROUGH THOUGHTFUL ENGAGEMENT.
EDUCATE THOSE AFFECTED BY WIEDEMANN-STEINER SYNDROME, A RARE GENETIC CONDITION, AND TO SUPPORT AND ADVOCATE FOR ONGOING SCIENTIFIC RESEARCH.
EXPANDED OUTREACH THROUGH ITS FAMILY VOLUNTEERS TO SERVE AS REGIONAL AMBASSADORS AND HOSTED SEVERAL ACTIVITIES TO RAISE AWARENESS OF WSS INCLUDING THE WSS INTERNATIONAL FAMILY CONFERENCE, ANNUAL WSS TRIATHLON, AND INTERNATIONAL WSS AWARENESS DAY.
RAISED AWARENESS AND SUPPORT TO INITIATE MEDICAL RESEARCH ON THE WSS GENE BY LAUNCHING A SCIENTIFIC ADVISORY BOARD AND SOLICITATION PROCESS TO SEEK INTERESTED RESEARCHERS AND MEDICAL PROFESSIONALS.
RAISED AWARENESS AND SUPPORT TO INITIATE MEDICAL RESEARCH ON THE WSS GENE.
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 |
|---|
| Diego Mahecha | BOARD MEMBER (STARTED MAR 2019) | 1.3 | $0 |
| Thor Misko | BOARD MEMBER (STARTED MAR 2019) | 3.8 | $0 |
| Jacob Cummings | BOARD MEMBER | 5 | $0 |
| Kim Lagravinese | BOARD MEMBER | 5 | $0 |
| Kirsten Stuart | SECRETARY | 13 | $0 |
| Christina O'Keeffe | TREASURER | 15 | $0 |
| Libby Woolford | PRESIDENT | 25 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202022279349302377_public.xml