Organizations Filed Purposes:
HEART VALVE VOICE US, A NONPROFIT PATIENT ADVOCACY ORGANIZATION, PROVIDES A UNITED VOICE FOR PEOPLE LIVING WITH HEART VALVE DISEASE. WE ADVOCATE FOR EARLY DETECTION, MEANINGFUL SUPPORT, AND TIMELY ACCESS TO APPROPRIATE TREATMENT FOR ALL PEOPLE AFFECTED BY HEART VALVE DISEASE.
HEART VALVE VOICE US RAISES AWARENESS OF HEART VALVE DISEASE THROUGH RADIO AND TELEVISION PUBLIC SERVICE ANNOUNCEMENTS (PSAS), ACTIVE SOCIAL MEDIA CAMPAIGNS, BUILDING PATIENT COMMUNITIES AND COALITION ACTIVITIES. THIS GRANT WAS PROVIDED BY THE EDWARDS LIFESCIENCES FOUNDATION EVERY HEARTBEAT MATTERS PROGRAM.
SERIES OF PATIENT-FOCUSED WEBINARS ON TOPICS INCLUDED: TIME TO ACT: WHAT YOU NEED TO KNOW ABOUT MEDICARE'S PROPOSED TAVR DECISION AND HOW TO LEND YOUR VOICE TO MAKE A DIFFERENCE; PATIENTS HELPING PATIENTS; INNOVATION & THE FUTURE OF VALVE DISEASE TREATMENT; NEW OPTIONS FOR HEART VALVE PATIENTS: RESULTS OF THE LATEST TRIALS; LIVING WITH HEART VALVE DISEASE. MORE THAN 2,000 VIEWS.
HEART VALVE VOICE US WILL INTRODUCE AN INTENSIVE PROGRAM TO TRAIN PATIENTS AND CARE PARTNERS TO BECOME RESEARCH ADVISORS AND ADVOCATES. THE PROGRAM - VALUING ADVOCATES' LIVES, VOICES AND EXPERIENCE (VALVE) IN RESEARCH - WILL BE THE BASIS FOR THE CREATION OF THE HEART VALVE DISEASE RESEARCH NETWORK (HVD NETWORK). THIS TRAINING IS BEING FUNDED THROUGH A PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE (PCORI) EUGENE WASHINGTON PCORI ENGAGEMENT AWARD AND WILL COMMENCE IN 2020.
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 |
|---|
| John Lewis | EXECUTIVE DIRECTOR | 40 | $41,538 |
| Chris May | TREASURER (FORMER) | 2 | $0 |
| Christina Rekash | BOARD MEMBER | 2 | $0 |
| Teresa Wright-Johnson | BOARD MEMBER | 2 | $0 |
| Marilyn Serafini | BOARD MEMBER | 2 | $0 |
| Candace Dematteis | BOARD MEMBER | 2 | $0 |
| Dr Charles Boustany | BOARD MEMBER | 2 | $0 |
| David Andelman | BOARD MEMBER | 2 | $0 |
| Dr Oluseun Alli | BOARD MEMBER | 2 | $0 |
| Donald May | EXECUTIVE VICE PRESIDENT | 2 | $0 |
| Norm Linsky | TREASURER | 2 | $0 |
| Susan Peschin | SECRETARY | 2 | $0 |
| Donnette Smith | CHAIR | 2 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202033189349307138_public.xml