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Colorado · Nonprofit

Moebius Syndrome Foundation

Moebius Syndrome Foundation (Colorado) receives grants from 16 organizations whose IRS filings report $486,903 to it, the largest being THE SHAW FAMILY ENDOWMENT FUND ($300,000). 10 of them have funded it in more than one year.

Revenue FY2025
$1.1M
Funders on record
16
Grants received
$487k
Net assets
$2.4M
10/16 repeat funderspeak grant-dependency 61%
01What it does

What Moebius Syndrome Foundation does

Mission

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with moebius syndrome and their families, promote greater awareness and understanding of moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of moebius syndrome and its associated conditions.

As stated on its FY2025 Form 990.

Programs

  1. Provide information and support to individuals with Moebius syndrome and their families. The newsletter and biannual conference are the primary means of accomplishing this goal.

    $389,038 spent$43,418 earned by the program
    59% of program spending
  2. Advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

    $246,643 spentof which $203,648 as grants
    37% of program spending
  3. To provide college scholarships to students with Moebius Syndrome.

    $24,000 spentof which $24,000 as grants
    4% of program spending

The 3 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $659,681.

02The organization over time

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.

100 = 20172017 Revenue 100 ($275k) Expenses 100 ($278k) Net assets 100 ($2.0M)2018 Revenue 120 ($331k) Expenses 149 ($415k) Net assets 91 ($1.8M)2019 Revenue 84 ($232k) Expenses 116 ($321k) Net assets 93 ($1.8M)2020 Revenue 38 ($104k) Expenses 216 ($600k) Net assets 72 ($1.4M)2021 Revenue 377 ($1.0M) Expenses 66 ($184k) Net assets 119 ($2.3M)2022 Revenue 130 ($358k) Expenses 187 ($520k) Net assets 95 ($1.9M)2023 Revenue 166 ($458k) Expenses 216 ($599k) Net assets 93 ($1.8M)2024 Revenue 123 ($338k) Expenses 102 ($283k) Net assets 101 ($2.0M)2025 Revenue 390 ($1.1M) Expenses 274 ($760k) Net assets 124 ($2.4M)
'17'18'19'20'21'22'23'24'25
Revenue (390)Expenses (274)Net assets (124)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 $1.6M to $2.4M (+51%).

$2.0M
$1.8M
$1.8M
$1.6M
$2.4M
$1.9M
$1.8M
$2.0M
$2.5M
'17'18'19'20'21'22'23'24'25
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.

2017
2018
2019
2020
2021
2022
2023
2024
2025
ContributionsProgram revenueInvestmentOther

90% of Moebius Syndrome Foundation’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).

This organization
Typical peer · 3,053 orgs

Surplus & reserves

Operating surplus or deficit each year, and months of liquidity in hand. 6 of the last 9 reported years ran a deficit.

−$2k
’17
−$83k
’18
−$89k
’19
−$496k
’20
$854k
’21
−$161k
’22
−$141k
’23
$55k
’24
$312k
’25
13
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.

Chief executive

Jennifer Whitman

Executive Director

As listed on its FY2025 Form 990.

'17'18'19'20'21'22'23'24'25
Listed9101091212121112
Joined·+6+0+0+4+2+0+0+5
No longer listed·50112014
03Who funds it

Who funds it, year by year

2017 → 2023: the base broadened from 1 funder to 4 funders, grant income fell $100k → $15k.

6 of 16 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 19% 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 Moebius Syndrome Foundation’s funders (the co-funder graph). Top 15 of 16 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

Moebius Syndrome Foundation leans on a few funders — its largest provides 62% of grant income and the top three 83%; half comes from just 1 funder.

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

62%
largest funder
83%
top three
~2
effective funders

Largest funder’s share by year: 2017 100% · 2018 73% · 2019 71% · 2020 65% · 2021 55% · 2022 51% · 2023 46% — 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

45% of Moebius Syndrome Foundation's funders are still giving 3 years after their first grant; 63% give in more than one year at all.

first grant+1y+2y+3y+4y+5y

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

Moebius Syndrome Foundation draws 100% of its grant income from funders outside Colorado, across 9 states in all.

ID
IL
NY
IN
NJ
CA
CO
NC
TX

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

’17
’18
’19
’20
’21
’22
’23
Colorado out of state home

Funder states come from each funder’s own filing. $90k arriving through sponsors registered in 4 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

Moebius Syndrome Foundation holds deeper cash reserves than three-quarters of the 1,645 philanthropy nonprofits its size.

Operating margin29% · above the median
Months of reserve12.7mo · top quartile
Revenue growth (annualized)19% · above the median

this organization peer median middle 50% of peers· 1,645 philanthropy nonprofits $1M–$10M, FY2025

Organizations like Moebius Syndrome Foundation

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 Colorado

Nationally

05Profile & governance

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

Where the money goes

87% of spending goes to programs.

Program 87%Management 10%Fundraising 3%

Governance

11
board members
100%
independent
✓Conflict-of-interest policy✓Whistleblower policy✓Document retention✓Board reviewed the 990✓Audited financials

Public support

51%

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

Footprint & structure

Files a return copy in 30 states

AK
NH
MN
IL
WI
MI
NY
MA
OR
OH
PA
NJ
RI
CA
CO
KY
WV
VA
MD
NM
KS
AR
TN
NC
SC
HI
MS
AL
GA
FL

Screen this organization

A dated, signed PDF of the compliance screen for Moebius Syndrome Foundation: 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 Moebius Syndrome Foundation?
Moebius Syndrome Foundation (Colorado) receives grants from 16 organizations whose IRS filings report $486,903 to it, the largest being THE SHAW FAMILY ENDOWMENT FUND ($300,000). 10 of them have funded it in more than one year.
How many funders does Moebius Syndrome Foundation have?
IRS filings report 16 organizations giving $486,903 in grants to Moebius Syndrome Foundation, 10 of which have funded it in more than one year.
Who is the largest funder of Moebius Syndrome Foundation?
THE SHAW FAMILY ENDOWMENT FUND is the largest funder on record, with $300,000 in grants. The full list of funders is on this page.
How can an organization like Moebius Syndrome Foundation find more funders?
Start with the funders already giving here, then look at the foundations that back similar organizations in Colorado. 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 2017–2025), and the filings of 16 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 22, 2026. What this page cannot tell you · view filing