Skip to the page content
Your donations
Passes our checks

Alport Syndrome Foundation Inc

EIN 20-8237159 · Phoenix, AZ

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

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE FOUNDATION WAS CREATED TO EDUCATE AND SUPPORT PATIENTS AND FAMILIES THAT HAVE BEEN AFFECTED BY THIS GENETIC KIDNEY DISEASE WITH A GOAL OF FUNDING RESEARCH, TO FIND MORE EFFECTIVE TREATMENT PROTOCOLS AND TO ULTIMATELY FIND A CURE.

Income
$1.2 million
Spending
$1.0 million
Spent on programs
91%
Reserves
26.2 months of spending
Largest source of income
donations and private grants, 89%
Employees
5
Volunteers
95
Highest pay
$105,000, 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

Strong: 100 out of 100. Higher than 88% of charities in its peer group (health care, $1m to $10m).

  • Reserves

    35 of 35

    Spendable reserves would cover 26.2 months of spending.

  • Debt

    20 of 20

    It owes 1% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 16% of income.

  • Income trend

    15 of 15

    Income rose 18% on the year before.

  • Spending floor

    15 of 15

    91% of spending went to programs and raising each dollar of donations cost 2 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

Strong: 100 out of 100. Higher than 67% of charities in its peer group (health care, $1m to $10m).

  • Independent board

    25 of 25

    9 of 9 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a 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

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or 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 (1)
  1. $916,993 spent. 570 NEW MEMBERS JOINED ASF. 527 PATIENTS ENROLLED IN THE ASF ALPORT PATIENT REGISTRY. 800 NEW MEMBERS JOINED THE ASF FACEBOOK SUPPORT GROUP. 89,000 WEBSITE VIEWS. 18,000 ASF YOUTUBE CHANNEL VIEWS. HOSTED A 2-DAY IN-PERSON MEETING FOR 123 PATIENT/FAMILY MEMBERS, WITH PARTIAL FINANCIAL ASSISTANCE PROVIDED TO 57 INDIVIDUALS FOR TRAVEL. 200 HOURS OF STAFF TIME SPENT MEETING VIRTUALLY WITH PATIENTS/CAREGIVERS. HIRED A PART-TIME RESEARCH DIRECTOR TO SUPPORT THE PHARMACEUTICAL AND BIOTECH PIPELINE. FACILITATED 974 PATIENT VOLUNTEER HOURS AND 114 CLINICIAN VOLUNTEER HOURS. PARTNERED WITH ENYO PHARMACEUTICALS TO PROVIDE PATIENT INSIGHTS INTO CLINICAL TRIAL DESIGN AND TO SHARE INFORMATION ABOUT THE PHASE-2 ALPESTRIA-1 STUDY, WHICH FULLY ENROLLED AHEAD OF SCHEDULE.

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 September 7, 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 September 30, 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 September 10, 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 September 7, 2026.

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

    Recognized by the IRS since April 2007.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 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 7, 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.