Arizona · Nonprofit
ALPORT SYNDROME FOUNDATION INC
ALPORT SYNDROME FOUNDATION INC (Arizona) receives grants from 36 organizations whose IRS filings report $3,063,911 to it, the largest being KENNETH WHALEN FAMILY FOUNDATION ($2,375,000). 20 of them have funded it in more than one year.
- Revenue FY2024
- $1.2M
- Funders on record
- 36
- Grants received
- $3.1M
- Net assets
- $2.8M
What Alport Syndrome Foundation Inc does
Mission
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.
As stated on its FY2024 Form 990.
Program
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.
$916,993 spentof which $324,631 as grants100% of program spending
The program described on its FY2024 Form 990. Program spending in total: $916,993.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2021 to 2022, from $1.8M to $2.3M (+29%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
89% of ALPORT SYNDROME FOUNDATION INC’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 1 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Lisa Bonebrake
Executive director
Board chair
Andrew Kronenberg
Board chair
As listed on its FY2024 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 7 funders to 18 funders, grant income rose $73k → $464k.
11 of 36 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 16% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of ALPORT SYNDROME FOUNDATION INC’s funders (the co-funder graph). Top 30 of 36 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
ALPORT SYNDROME FOUNDATION INC leans on a few funders — its largest provides 78% of grant income and the top three 88%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
Largest funder’s share by year: 2017 48% · 2018 71% · 2019 46% · 2020 89% · 2021 92% · 2022 88% · 2023 86% — growing more concentrated.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
33% of ALPORT SYNDROME FOUNDATION INC's funders are still giving 3 years after their first grant; 56% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
ALPORT SYNDROME FOUNDATION INC draws 100% of its grant income from funders outside Arizona, across 15 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $504k arriving through sponsors registered in 10 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
ALPORT SYNDROME FOUNDATION INC runs a healthier operating margin than half of the 8,121 health nonprofits its size.
this organization peer median middle 50% of peers· 8,121 health nonprofits $1M–$10M, FY2024
Organizations like ALPORT SYNDROME FOUNDATION INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Arizona
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
91% of spending goes to programs.
Governance
Public support
55%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 12 states
Screen this organization
A dated, signed PDF of the compliance screen for ALPORT SYNDROME FOUNDATION INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds ALPORT SYNDROME FOUNDATION INC?
- ALPORT SYNDROME FOUNDATION INC (Arizona) receives grants from 36 organizations whose IRS filings report $3,063,911 to it, the largest being KENNETH WHALEN FAMILY FOUNDATION ($2,375,000). 20 of them have funded it in more than one year.
- How many funders does ALPORT SYNDROME FOUNDATION INC have?
- IRS filings report 36 organizations giving $3,063,911 in grants to ALPORT SYNDROME FOUNDATION INC, 20 of which have funded it in more than one year.
- Who is the largest funder of ALPORT SYNDROME FOUNDATION INC?
- KENNETH WHALEN FAMILY FOUNDATION is the largest funder on record, with $2,375,000 in grants. The full list of funders is on this page.
- How can an organization like ALPORT SYNDROME FOUNDATION INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Arizona. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 36 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing