Organizations Filed Purposes:
TO IMPROVE THE QUALITY OF LIFE FOR PERSONS WITH A BLEEDING DISORDER BY PROVIDING AND MAINTAINING ACCESS TO HIGHLY QUALIFIED MEDICAL TREATERS AND SUCCESSFULLY PROVEN MEDICAL REGIMES.
OUR MAJOR ACCOMPLISH THIS YEAR WAS THE PASSING OF FEDERAL LEGISLATION, A FIRST FOR THE ASSOCIATION. THE SKILLED NURSING FACILITIES ACT WAS SEVERAL YEARS IN THE MAKING. THE ACT WAS PASSED AS PART OF THE YEAR-END FEDERAL SPENDING STIMULUS AND COVID-19 BILL. THIS ACT WILL IMPROVE ACCESS TO CRITICAL HEALTH CARE SERVICES FOR INDIVIDUALS WITH HEMOPHILIA PROVIDED THROUGH SKILLED NURSING FACILITIES BY ADDING THEIR TREATMENTS TO THE LIST OF SERVICES PAID FOR SEPRATELY BY MEDICARE. CURENTLY, MEDICARE PATIENTS WITH HEMOPHILIA & OTHER BLEEDING DISORDERS STRUGGLE TO FIND SKILLED NURSING FACILITIES THAT WILL ACCEPT THEM DUE TO THE HIGH COST OF CLOTTING FACTORS.
THE ORGANIZATION COMPLETED A COMPLETE DIGITAL SHIFT IN OUR OPERATION. IN A MATTER OF A FEW WEEKS WE TRANSITIONED EXECUTIVE MEETING, BOARD OF TRUSTEE MEETING, COMMITTEE MEETINGS, EVENTS AND PROGRAMING OVER TO A DIGITAL & VIRTUAL PLATFORM. WE NEARLY DOUBLED THE AMOUNT OF EDUCATION OPPORTUNITIES FOR OUR COMMUNITY WHICH PROVIDED KNOWLEDGE BUT ALSO INTERACTION WHICH WE ALL DESPERATELY NEEDED DURING SUCH AN ISOLATING TIME.
OUR THIRD ACCOMPLISHMENT HAS BEEN OUR COVID-19 RELIEF FUND. THIS FUND IS SPECIFICALLY AVAILABLE TO OUR MEMBERS, FUNDED BY A GRANT FROM THE HEMOPHILIA ALLIANCE FOUNDATION AND OUR VALUABLE DONORS. WE HAVE PROVIDED GIFT CARDS FOR FOOD FOR FAMILIES WHO ARE OUT OF WORK AND CANNOT AFFORD TO EAT, ALONG WITH RENT ASSISTANCE TO KEEP A ROOF OVER THEIR HEAD AND OTHER MISCELLANEOUS DAY TO DAY LIVING COSTS.
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 |
|---|
| Stephanie Lapidow | EXECUTIVE DIRECTOR | 45 | $104,819 |
| Elana Bostick | ASS'T DIRECTOR | 14 | $69,482 |
| Jeff Lynch Md | VICE PRESIDENT | 1 | $0 |
| Jerry Seltzer | TRUSTEE | 1 | $0 |
| Mark Scudiery | TRUSTEE | 1 | $0 |
| Mary Petti | TRUSTEE | 1 | $0 |
| Peter Marcano | TRUSTEE | 1 | $0 |
| Lisa Maniaci | TRUSTEE | 1 | $0 |
| Robert Lessner | TRUSTEE | 1 | $0 |
| Issaiah Williamson | TRUSTEE | 1 | $0 |
| Elaine Kelly | TRUSTEE | 1 | $0 |
| Richard Keelty | TRUSTEE | 1 | $0 |
| George Keelty | TRUSTEE | 1 | $0 |
| Rajh Odi | TRUSTEE | 1 | $0 |
| Milinda Digiovanni | TRUSTEE | 1 | $0 |
| Tracie Desarno | TRUSTEE | 1 | $0 |
| David Lechner | TRUSTEE | 1 | $0 |
| Chris Maniaci | SECRETARY | 1 | $0 |
| Carl Piercey | TREASURER | 1 | $0 |
| Steven Moersdorf | 1ST VICE PRESIDENT | 1 | $0 |
| Ronald Grayzel | PRESIDENT | 1 | $0 |
| John Markowitz | IMMED PAST 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-990/202140709349300014_public.xml