Program areas at Andrews Firefly Fund
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.
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.
Firefly Fund supports medical research that could provide therapeutics for the treatment of niemann pick type c disease.
Grants made by Andrews Firefly Fund
Who funds Andrews Firefly Fund
Grants from foundations and other nonprofits
Personnel at Andrews Firefly Fund
| Name | Title | Compensation | Date of data |
|---|
| Pam Andrews | Co - Founder and Executive Director | | 2023-03-09 |
| Pam Serves | Executive Director of Firefly Fund | | 2023-03-09 |
| Beryl Pam Andrews | Past Executive Director | $95,000 | 2021-12-31 |
| Mariben Ramsey | President and Board | $0 | 2023-03-09 |
| Beryl "Berry" Crowley | Board of Directors and Chair, Development Board | $0 | 2023-03-09 |
| ...and 2 more key personnel |
Financials for Andrews Firefly Fund
| Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
|---|
| Total grants, contributions, etc. | $38,267 | $446,645 | -91.4% |
| Program services | $0 | $0 | - |
| Investment income and dividends | $0 | $0 | - |
| Tax-exempt bond proceeds | | $0 | - |
| Royalty revenue | | $0 | - |
| Net rental income | | $0 | - |
| Net gain from sale of non-inventory assets | $0 | $0 | - |
| Net income from fundraising events | | $0 | - |
| Net income from gaming activities | | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $0 | $107,120 | -100% |
| Total revenues | $38,267 | $553,765 | -93.1% |
Organizations like Andrews Firefly Fund
| Organization | Type | Location | Revenue |
|---|
| Dyslexia Association of the Pennyrile | 501(c)(3) | Hopkinsville, KY | $77,882 |
| New England Regional Genetics Group | 501(c)(3) | Burlington, VT | $38,265 |
| Lupus Foundation of America Mid-South Chapter | 501(c)(3) | Nashville, TN | $163,782 |
| Lupus Foundation of Colorado | 501(c)(3) | Lone Tree, CO | $98,180 |
| Made A Masterpiece | 501(c)(3) | Houston, TX | $156,711 |
| Asthma and Allergy Foundation of America Alaska Chapter | 501(c)(3) | Anchorage, AK | $184,888 |
| Jack McGovern Coats Disease Foundation | 501(c)(3) | Burlingame, CA | $182,603 |
| Tyler Type 1 Diabetes Foundation | 501(c)(3) | Tyler, TX | $92,915 |
| The Hemispherectomy Foundation | 501(c)(3) | Granbury, TX | $104,764 |
| Learning About Diabetes | 501(c)(3) | Tucson, AZ | $10,277 |
Data update history
June 29, 2023
Posted financials
Added Form 990 for fiscal year 2020
June 28, 2023
Updated personnel
Identified 1 new personnel
May 22, 2023
Used new vendors
Identified 1 new vendor, including
March 9, 2023
Updated personnel
Identified 3 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchReceives government fundingTax deductible donations
General information
- Address
- PO Box 92616
- Austin, TX 78709
- Metro area
- Austin-Round Rock-Georgetown, TX
- County
- Travis County, TX
- Website URL
- fireflyfund.org/Â
- Phone
- (512) 750-1609
IRS details
- EIN
- 81-3737330
- Fiscal year end
- December
- Taxreturn type
- Form 990-EZ
- Year formed
- 2015
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G80: Specifically Named Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
Free account sign-up
Want updates when Andrews Firefly Fund has new information, or want to find more organizations like Andrews Firefly Fund?
Create free Cause IQ account