Organizations Filed Purposes:
THE FOUNDATION WAS CREATED TO EDUCATE AND SUPPORT PATIENTS AND FAMILIES THAT HAVE BEEN AFFECTED BY THIS GENETIC KIDNEY DISEASE WITH A GOAL OF FUNDING RESEARCH, TO FIND MORE EFFECTIVE TREATMENT PROTOCOLS AND TO ULTIMATELY FIND A CURE.
TO IMPROVE THE LIVES OF THOSE AFFECTED BY ALPORT SYNDROME THROUGH EDUCATION, EMPOWERMENT, ADVOCACY, AND FUNDING RESEARCH. THE FOUNDATIONS VISION IS TO MAKE ALPORT SYNDROME A TREATABLE DISEASE AND FIND A CURE.
AWARDED 250,000 IN RESEARCH FUNDS. INCREASED SUPPORT FOR PATIENT REGISTRY. HELD THE LARGEST PATIENT MEETING TO DATE WITH 118 ATTENDEES FROM 27 STATES. AWARDED 7,000 IN SCHOLARSHIPS FOR YOUNG PATIENTS. ADDED 5 MEDICAL ADVISORY MEMBERS.
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 |
|---|
| Gina Parziale | EXECUTIVE DIRECTOR TO 7/2019 | 40 | $73,815 |
| Lisa Bonebrake | EXEC DIR FROM 8/2019/ DIR.COMM. TO 7/2019 | 40 | $0 |
| Janine Reed | DIRECTOR FROM 12/2019 | 5 | $0 |
| Jennifer Beauchamp | DIRECTOR FROM 2/2019 | 5 | $0 |
| Phillip Kumnick | DIRECTOR | 5 | $0 |
| Andre Weinstock | DIRECTOR | 5 | $0 |
| Sharon Lagas | CO-FOUNDER PAST CHAIR | 5 | $0 |
| Martin Dunleavy | TREASURER | 5 | $0 |
| Ryan Linder | SECRETARY | 5 | $0 |
| Andrew Kronenberg | CHAIR | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202043089349302574_public.xml