2024-08-13T10:11:00-05:00 2023-12-31 742920819 ATCHLEY & ASSOCIATES LLP 1005 LA POSADA DRIVE AUSTIN TX 78752 990EZ 2023-01-01 813737330 ANDREWS FIREFLY FUND ANDR 5127501609 PO BOX 92616 AUSTIN TX 78709 BERYL CROWLEY DIRECTOR 5127501609 2024-08-12 1 1 RENAE DUNCAN P01257722 5123462086 2024-08-07 2023 2024-08-08 14:25:15Z X FIREFLYFUND.ORG X X 55210 X 55210 55210 57000 122071 18723 50117 247911 -192701 292418 0 99717 X 285700 97817 6718 6735 292418 104552 0 4835 292418 99717 X TO FUND AND SUPPORT RESEARCH AND EDUCATION TO ACCLERATE A CURE FOR RARE AND FATAL NEURODEGENERATIVE GENETIC DISEASES THAT AFFECT CHILDREN. NEWBORN SCREENING: SINCE 2017 FIREFLY FUND HAS BEEN LEADING THE NPC NBS INITIATIVE WITH A VISION THAT ALL NEWBORNS WILL BE SCREENED FOR NPC, ENABLING EARLY DIAGNOSIS AND INTERVENTION. THE INITIATIVE IS LED BY A BROAD STAKEHOLDER WORKING GROUP, CHAIRED BY DRS. ELIZABETH BERRY-KRAVIS OF RUSH AND MARC PATTERSON OF MAYO CLINIC, WHICH INCLUDES THE NPC COMMUNITY AND INDUSTRY STAKEHOLDERS. TWENTY NINE (29) NPC AND NBS EXPERT CLINICIANS FROM AROUND THE US AND CANADA MAKE UP THE NPC NBS CLINICAL ROUNDTABLE SERVING THE INITIATIVE AS ADVISORS. 15000 173638 FIREFLY FUND SUPPORTS MEDICAL RESEARCH THAT COULD PROVIDE THERAPEUTICS FOR THE TREATMENT OF NIEMANN PICK TYPE C DISEASE. 22000 21705 PATIENT ACCESS/IMPACT: WORK WITH ACADEMIC CENTERS OF EXCELLENCE AND PATIENT ADVOCACY ORGANIZATIONS TO REMOVE BARRIERS TO CARE AND ACCESS TO THERAPIES NECESSARY FOR THEIR LOVED ONES WITH AN NPC DIAGNOSIS. 20000 21705 217048 CHRISTOPHER EVANS ANDREWS BOARD OF DIRECTORS 5.00 0 0 0 LARA LANERI KEEL DIRECTOR 5.00 0 0 0 SUSIE DUDLEY DIRECTOR 5.00 0 0 0 JENNIFER BERBAS BOERNER DIRECTOR 5.00 0 0 0 BERYL P CROWLEY DIRECTOR 5.00 0 0 0 BERYL PAMELA ANDREWS EXECUTIVE DIRECTOR 40.00 122071 0 0 X 0 0 0 0 0 0 0 0 0 0 0 0 0 0 BERYL ANDREWS PO BOX 92616 AUSTIN TX 78709 5127501609 0 0 0 0 0 0 0 0 0 0 NONE NONE 1 X 508577 521349 446645 38627 55210 1570408 508577 521349 446645 38627 55210 1570408 902961 667447 1570408 0.42500 0.58260 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED FORM 990-EZ, PART I, LINE 10 - GRANTS AND SIMILAR AMOUNTS PAID ACTIVITY CLASSIFICATION: GRANT. GRANTEE NAME: RUSH UNIVERSITY MEDICAL CENTER. GRANTEE ADDRESS: 1700 W. VAN BUREN STREET SUITE 250 CHICAGO, IL 60612. AMOUNT GIVEN: 22,000. FORM 990-EZ, PART I, LINE 10 - GRANTS AND SIMILAR AMOUNTS PAID ACTIVITY CLASSIFICATION: GRANT. GRANTEE NAME: NATIONAL NIEMANN-PICK DISEASE FOUNDATION INC . GRANTEE ADDRESS: PO BOX 49 FORT ATKINSON, WI 53538. AMOUNT GIVEN: 15,000. FORM 990-EZ, PART I, LINE 10 - GRANTS AND SIMILAR AMOUNTS PAID ACTIVITY CLASSIFICATION: GRANT. GRANTEE NAME: HOPE FOR MARIAN. GRANTEE ADDRESS: 1519 S FIFTH AVENUE ARCADIA, CA 91006. AMOUNT GIVEN: 20,000. TOTAL INCLUDED ON FORM 990-EZ, LINE 10: 57,000. FORM 990-EZ, PART I, LINE 16 - OTHER EXPENSES DESCRIPTION: BOOKS, SUBSCRIPTIONS, REFERENCE. AMOUNT: 17,064. DESCRIPTION: SUPPLIES. AMOUNT: 216. DESCRIPTION: TELEPHONE, TELECOMMUNICATIONS. AMOUNT: 6,580. DESCRIPTION: WEBSITE HOSTING. AMOUNT: 588. DESCRIPTION: BANK AND MERCHANT FEES. AMOUNT: 1,218. DESCRIPTION: CONFERENCE, CONVENTION, MEETING. AMOUNT: 3,921. DESCRIPTION: TRAVEL. AMOUNT: 9,432. DESCRIPTION: INSURANCE - LIABILITY, D AND O. AMOUNT: 570. DESCRIPTION: PAYROLL TAXES. AMOUNT: 9,338. DESCRIPTION: MEALS (BUSINESS OR STEWARDSHIP). AMOUNT: 160. DESCRIPTION: OUTREACH AND AWARENESS. AMOUNT: 498. DESCRIPTION: MEMBERSHIPS AND DUES. AMOUNT: 532. TOTAL TO FORM 990-EZ, LINE 16: 50,117. FORM 990-EZ, PART II, LINE 24 - OTHER ASSETS DESCRIPTION: PREPAID EXPENSES. BEG. OF YEAR AMOUNT: 6,718. END OF YEAR AMOUNT: 6,735. FORM 990-EZ, PART II, LINE 26 - OTHER LIABILITIES DESCRIPTION: REIMBURSEMENTS PAYABLE. BEG. OF YEAR AMOUNT: 0. END OF YEAR AMOUNT: 693. DESCRIPTION: PAYROLL LIABILITIES. BEG. OF YEAR AMOUNT: 0. END OF YEAR AMOUNT: 4,142. THE ORGANIZATION DID NOT, DURING THE YEAR, RECEIVE ANY FUNDS, DIRECTLY,OR INDIRECTLY, TO PAY PREMIUMS ON A PERSONAL BENEFIT CONTRACT.THE ORGANIZATION, DID NOT, DURING THE YEAR, PAY ANY PREMIUMS, DIRECTLY,OR INDIRECTLY, ON A PERSONAL BENEFIT CONTRACT.