Organizations Filed Purposes:
THE MISSION OF MILA'S MIRACLE FOUNDATION IS TO FIND AND FUND PATHS TO A CURE FOR BATTEN AND OTHER NEURODEGENERATIVE DISEASES. FAMILIES IN THIS COMMUNITY HAVE BEEN PIVOTAL IN RAISING THE NECESSARY FUNDS AND AWARENESS. TOGETHER WITH OUR INCREDIBLE SCIENTISTS AND PARTNER ORGANIZATIONS, WE HOPE THAT OUR WORK WILL IMPROVE THE PROGNOSIS OF BATTEN DISEASE AND OTHER NEURODEGENERATIVE DISEASES. THROUGH OUR FUNDRAISING - WHICH INCLUDES GRASSROOTS EFFORTS, INDIVIDUALS AND FAMILY FOUNDATIONS, AND EVENTS - WE HAVE STARTED TWO GENETIC THERAPY TRIALS (ONE UNDERWAY, THE OTHER STILL IN THE PRE-CLINICAL PHASE) AS WELL AS FUND SCIENTISTS FOCUSED ON BENCH RESEARCH TO UNDERSTAND THE UNDERLYING CAUSES AND INDICATIONS OF CLN7 BATTEN DISEASE. ADDITIONALLY, WE ARE FOCUSED ON HELPING TO GROW THE NEW FIELD OF TRULY PERSONAL MEDICINES WHICH MILA'S STORY HAS OPENED UP, AND MAKING IT ACCESSIBLE TO MANY MORE ACROSS HUNDREDS OF RARE DISEASES. OUR HOPE IS THAT OUR WORK WILL GIVE MILA AND MANY OTHERS LIKE HER A SECOND
THROUGH OUR FUNDRAISING - WHICH INCLUDES GRASSROOTS EFFORTS, INDIVIDUALS AND FAMILY FOUNDATIONS, AND EVENTS - MMF IS WORKING HARD TO START AND FUND NEW TREATMENTS THAT COULD HELP CHILDREN WITH BATTEN AND OTHER LIFE- THREATENING NEUROLOGICAL DISORDERS. IN 2019, OUR FOUNDATION'S WORK FOCUSED ON THREE PRIMARY PROGRAM INITIATIVES: AN ANTISENSE OLIGONUCLEOTIDE (ASO) CLINICAL TRIAL & THE EXPANSION OF PERSONAL MEDICINES (UNDERWAY); A CLN7 GENE THERAPY TRIAL (IN THE PRE-CLINICAL PHASE); AND BASIC SCIENCE RESEARCH FOR BATTEN DISEASE (TWO GRANT PROJECTS UNDERWAY).
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 |
|---|
| Julia Vitarello | PRESIDENT | 40 | $100,000 |
| Lori Sames | BOARD MEMBER | 1 | $0 |
| Adam Vitarello | VICE CHAIR | 1 | $0 |
| Katherine Fox Nagel | CHAIR | 1 | $0 |
| Jeni Vitarello | TREASURER | 1 | $0 |
| Julie Mitchell | SECRETARY | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202002949349300920_public.xml