Organizations Filed Purposes:
THE MISSION OF THE EHE FOUNDATION IS TO SEEK TREATMENTS AND A CURE FOR EPITHELIOD HEMANGIOENDOFTHELIOMA EHE BY INCREASING AWARENESS, PURSUING SCIENTIFIC RESEARCH, ADVOCATING FOR AND SUPPORTING EHE PATIENTS.
IN 2020, THE EHE FOUNDATION ORGANIZED AND HOSTED SEVERAL NATIONAL AND INTERNATIONAL GRASSROOTS FUNDRAISING EVENTS TO RAISE FUNDS AND AWARENESS OF EHE. THESE EVENTS INCLUDED THE ANNUAL GLOBAL 5K, SEVERAL LOCAL AND REGIONAL VIRTUAL 5K RUN/WALKS AND A GIVING TUESDAY DOUBLING EVENT.
IN 2020, THE EHE FOUNDATION CONNECTED WITH OVER 250 NEWLY DIAGNOSED PATIENTS BY PROVIDING ONLINE AND 11 PEER-TO-PEER SUPPORT, MEDICAL INFORMATION AND RESOURCES. EHE PATIENTS ARE LOCATED IN 73 COUNTRIES WORLDWIDE. THE FOUNDATION ADMINISTERS A TISSUE DONATION PROGRAM AND LAUNCHED A BIOBANK TO ASSIST EHE PATIENTS WITH INFORMATION AND PROCESS ON DONATING TISSUE FOR RESEARCH INITIATIVES. THE FOUNDATION ALSO PARTICIPATED AS A PARTNER MEMBER OF THE SARCOMA COALITION COMMITTEE, DEDICATED TO BRINGING AWARENESS AND STRONGER VOICE TO ISSUES CONFRONTING SARCOMA PATIENTS ANDRESEARCHERS.
IN 2020, THE EHE FOUNDATION CONTINUED ITS SUPPORT OF STRATEGIC RESEARCH INITIATIVES FOCUSED ON GENETIC REGULATION OF EHE, DEVELOPMENT OF A CELL LINE IN PARTNERSHIP WITH THE BROAD INSTITUTE RARE CANCER DEPENDENCY MAP INITIATIVE, AND MAPPING OF EHE GENETICS AND MICROENVIRONMENT. IN ADDITION, THE FOUNDATION IMPLEMENTED A BIOBANK, TO CREATE A REPOSITORY FOR DONATED EHE TISSUE FROM PATIENTS TO SUPPORT RESEARCH EFFORTS. THE FOUNDATION ALSO SUPPORTED THE RESEARCH EFFORTS AT THE EHE INTERNATIONAL CENTER OF EXPERTISE AND CONTINUED AS A PARTNER ADVOCACY ORGANIZATION WITH THE NCI MYPART NATURAL HISTORY STUDY.ALSO IN 2020, THE FOUNDATION CONTINUED TO RECEIVE SUPPORT FROM THE CHAN ZUCKBERGERG INITIATIVE, RARE AS ONE PROJECT WITH THE GOAL TO ESTABLISH AN INTERNATIONAL PATIENT-LED RESEARCH NETWORK ON SHARED RESEARCH PRIORITIES.
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 |
|---|
| Jenni Kovach | DIR OF DEVELOPMENT | 20 | $0 |
| Lisa Deyoung | PATIENT LIASON | 40 | $0 |
| Sarah Yaneza | DIRECTOR OF FINANCE | 2 | $0 |
| Leeann Conner | DIRECTOR OF FINANCE | 40 | $0 |
| Jane Gutkovich | VP RESARCH DIRECTOR | 40 | $0 |
| Julia Wahl | PRESIDENT | 40 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202131209349301933_public.xml