Andrews Firefly Fund
- Assets
- $104.6k
- Revenue
- $0.0
- Investments
- $0.0
- Employees
- 1
- Location
- Austin, TX
- Founding
- 03/2017
- Data as of
- 12/2023
- EIN
- 81-3737330
Organization Overview
Andrews Firefly Fund, operating under the name Firefly Fund, is located in Austin, TX. The organization was established in 2017. According to its NTEE Classification (G80) the organization is classified as: Specifically Named Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Firefly Fund is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2023, Firefly Fund generated $55.2k in total revenue. This represents a relatively dramatic decline in revenue. Over the past 7 years, the organization has seen revenues fall by an average of (24.5%) each year. All expenses for the organization totaled $247.9k during the year ending 12/2023. You can explore the organizations financials more deeply in the financial statements section below.
Form
990EZ
Mission & Program ActivityExcerpts From the 990EZ Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
NEWBORN SCREENING PREPAREDNESS AND ADVOCACY; MEDICAL RESEARCH; PATIENTS ACCESS/IMPACT
Describe the Organization's Program Activity:
Part 3
SINCE 2017 FIREFLY FUND HAS BEEN LEADING THE NPC NBS INITIATIVE WITH A VISION THAT ALL NEWBORNS WILL BE SCREENED FOR NPC, ENABELING 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.
FIREFLY FUND SUPPORTS MEDICAL RESEARCH THAT COULD PROVIDE THERAPEUTICS FOR THE TREATMENT OF NIEMANN PICK TYPE C DISEASE.
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.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Christopher Evans Andrews Board Of Directors | 5 | $0 | |
Lara Laneri Keel Director | 5 | $0 | |
Susie Dudley Director | 5 | $0 | |
Jennifer Berbas Boerner Director | 5 | $0 | |
Beryl P Crowley Director | 5 | $0 | |
Beryl Pamela Andrews Executive Director | 40 | $122,071 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Total Revenue from Contributions, Gifts, Grants & Similar | $55,210 |
| Total Program Service Revenue | $0 |
| Membership dues | $0 |
| Investment income | $0 |
| Gain or Loss | $0 |
| Net Income from Gaming & Fundraising | $0 |
| Other Revenue | $0 |
| Total Revenue | $55,210 |
| Statement of Expenses | |
|---|---|
| Grants and similar amounts paid | $0 |
| Benefits paid to or for members | $0 |
| Salaries, other compensation, and employee benefits | $122,071 |
| Professional fees and other payments to independent contractors | $18,723 |
| Occupancy, rent, utilities, and maintenance | $0 |
| Printing, publications, postage, and shipping | $0 |
| Other expenses | $50,117 |
| Total expenses | $247,911 |
| Balance Sheet | |
|---|---|
| Cash, savings, and investments | $97,817 |
| Other assets | $0 |
| Total assets | $104,552 |
| Total liabilities | $4,835 |
| Net assets or fund balances | $99,717 |
Grants Awarded
Over the last fiscal year, Andrews Firefly Fund has awarded $185,456 in support to 6 organizations.
| Grant Recipient | Amount |
|---|---|
MONTEFIORE CHILDREN'S HOSPITAL PURPOSE: NEWBORN SCREENINGS | $100,000 |
NATIONAL INSTITUTES OF HEALTH PURPOSE: NEWBORN SCREENINGS | $10,000 |
UNIVERSITY OF MICHIGAN MEDICAL SCHOOL PURPOSE: MEDICAL RESEARCH | $25,000 |
3D COMMUNICATIONS PURPOSE: NEWBORN SCREENINGS | $30,456 |
NATIONAL NIEMANN-PICK DISEASE FOUNDATION PURPOSE: PATIENT ACCESS PROGRAM | $10,000 |
RUSH UNIVERSITY CHILDREN'S HOSPITAL PURPOSE: PATIENT ACCESS PROGRAM | $10,000 |