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Michigan · Nonprofit

DON'T FORGET ME

DON'T FORGET ME (Michigan) receives grants from 10 organizations whose IRS filings report $634,757 to it, the largest being Harper's Hope The Roth Family Foundation ($415,652). 6 of them have funded it in more than one year.

Revenue FY2025
$473k
Funders on record
10
Grants received
$635k
Net assets
$271k
6/10 repeat funderspeak grant-dependency 59%
01What it does

What Don'T Forget Me does

Mission

The mission of the organization is to raise money to fund research to find a cure and a therapy for children with bpan. Beta-propeller protein- associated neurodegeneration (bpan) is a genetic disorder that damages the nervous system. It is a progressive disease found in children. There are only 500 known cases in the entire world, and there is very little research being done.

As stated on its FY2025 Form 990.

Program

  1. Awarding of grants to various medical and research facilities to further bpan research.

    $469,743 spentof which $466,343 as grants
    100% of program spending

The program described on its FY2025 Form 990. Program spending in total: $469,743.

02The organization over time

The organization over time

Each line starts at 100 in 2020, so what you read is the shape rather than the size: 150 means half as much again as 2020, 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.

100 = 20202020 Revenue 100 ($241k) Expenses 100 ($87k) Net assets 100 ($154k)2021 Revenue 210 ($505k) Expenses 279 ($241k) Net assets 271 ($418k)2022 Revenue 115 ($276k) Expenses 503 ($435k) Net assets 168 ($259k)2023 Revenue 155 ($372k) Expenses 243 ($210k) Net assets 273 ($421k)2024 Revenue 69 ($166k) Expenses 366 ($316k) Net assets 175 ($271k)2025 Revenue 197 ($473k) Expenses 546 ($473k) Net assets 176 ($271k)
202020212022202320242025
Revenue (197)Expenses (546)Net assets (176)Peer revenue range

Balance sheet

Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2020 to 2021, from $154k to $418k (+171%).

$154k
$418k
$259k
$421k
$271k
$437k
202020212022202320242025
Total assetsTotal liabilities

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.

2020
2021
2022
2023
2024
2025
ContributionsProgram revenueInvestmentOther

Government-grant reliance: 2020 50% · 2021 60% · 2022 23% · 2023 14% · 2024 100% · 2025 100%. Grants only. Government contracts and fees sit inside program revenue.

100% of DON'T FORGET ME’s revenue is contributions — more reliant on donations than three-quarters of its peers (82% for the typical peer).

This organization
Typical peer · 14,893 orgs

Surplus & reserves

Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 6 reported years ran a deficit.

$154k
’20
$264k
’21
−$159k
’22
$162k
’23
−$150k
’24
$568
’25
11
months of
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.

202020212022202320242025
Listed443333
Joined·+0+0+0+0+0
No longer listed·01000
03Who funds it

Who funds it, year by year

2020 → 2023: the base broadened from 2 funders to 5 funders, grant income rose $5k → $219k.

6 of 10 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 34% 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 DON'T FORGET ME’s funders (the co-funder graph). 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

DON'T FORGET ME leans on a few funders — its largest provides 65% of grant income and the top three 89%; half comes from just 1 funder.

the vertical line marks half of all grant income — 1 funder to its left

34% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund DON'T FORGET ME.

65%
largest funder
89%
top three
~2
effective funders

Largest funder’s share by year: 2020 98% · 2021 88% · 2022 46% · 2023 84% — diversifying over time.

“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

43% of DON'T FORGET ME's funders are still giving 2 years after their first grant; 60% give in more than one year at all.

first grant+1y+2y

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

DON'T FORGET ME draws 99% of its grant income from funders outside Michigan, across 4 states in all.

MI
NJ
DE
NC

In-state vs out-of-state, by year

’20
’21
’22
’23
Michigan out of state home

Funder states come from each funder’s own filing. $213k arriving through sponsors registered in 6 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.

04Its place in the field

Against its field

DON'T FORGET ME is better cushioned than half of the 7,883 health nonprofits its size.

Operating margin0% · below the median
Months of reserve11.1mo · above the median
Revenue growth (annualized)14% · above the median

this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025

Organizations like DON'T FORGET ME

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 Michigan

Nationally

05Profile & governance

Read directly from this organization’s own Form 990, as neutral context.

Where the money goes

99% of spending goes to programs.

Program 99%Management 1%Fundraising 0%

Governance

4
board members
100%
independent
–Conflict-of-interest policy–Whistleblower policy–Document retention–Board reviewed the 990–Audited financials

Public support

100%

Share of support from the public (Schedule A) — the basis for its public-charity status.

Screen this organization

A dated, signed PDF of the compliance screen for DON'T FORGET ME: 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.

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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 DON'T FORGET ME?
DON'T FORGET ME (Michigan) receives grants from 10 organizations whose IRS filings report $634,757 to it, the largest being Harper's Hope The Roth Family Foundation ($415,652). 6 of them have funded it in more than one year.
How many funders does DON'T FORGET ME have?
IRS filings report 10 organizations giving $634,757 in grants to DON'T FORGET ME, 6 of which have funded it in more than one year.
Who is the largest funder of DON'T FORGET ME?
Harper's Hope The Roth Family Foundation is the largest funder on record, with $415,652 in grants. The full list of funders is on this page.
How can an organization like DON'T FORGET ME find more funders?
Start with the funders already giving here, then look at the foundations that back similar organizations in Michigan. 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 FY2025 (financials across 2020–2025), and the filings of 10 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