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Andrews Firefly Fund

EIN 81-3737330 · Austin, TX

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthFair58 out of 100GovernanceGood72 out of 100Impact evidenceDescribes programsHow well its results are evidenced

Points to look into

  • It reported loans to or from officers, directors or other insiders.

These come from the organization's own tax return. There may be a good explanation; ask the charity.

What it says it does

TO FUND AND SUPPORT RESEARCH AND EDUCATION TO ACCLERATE A CURE FOR RARE AND FATAL NEURODEGENERATIVE GENETIC DISEASES THAT AFFECT CHILDREN.

Income
$649,177
Spending
$737,307
Spent on programs
80%
Reserves
0.2 months of spending
Largest source of income
donations and private grants, 100%
Employees
2
Volunteers
7
Highest pay
$95,000, executive director

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Fair: 58 out of 100. Higher than 18% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    4 of 35

    Spendable reserves would cover 0.2 months of spending.

  • Debt

    20 of 20

    It owes 13% of what it owns.

  • Living within its means

    4 of 15

    Spending exceeded income by 14% of income.

  • Income trend

    15 of 15

    Income rose 1076% on the year before.

  • Spending floor

    15 of 15

    80% of spending went to programs and raising each dollar of donations cost 12 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Good: 72 out of 100. Higher than 43% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    5 of 8 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    0 of 8

    Reports no written whistleblower policy.

  • Record keeping policy

    0 of 7

    Reports no written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    12 of 15

    Its accounts were reviewed or compiled by an independent accountant, but not audited.

  • No reported misuse

    0 of 10

    Reports at least one of: diversion of assets, excess benefits, loans to insiders.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $470,576 spent. 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.
  2. $58,822 spent. FIREFLY FUND SUPPORTS MEDICAL RESEARCH THAT COULD PROVIDE THERAPEUTICS FOR THE TREATMENT OF NIEMANN PICK TYPE C DISEASE.
  3. $58,822 spent. 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.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since March 2017.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.