Moebius Syndrome Foundation: FY2023 Nonprofit Profile & Form 990 (EIN 13-3753992)

Revenue by fiscal year
FY2020	$104K
FY2021	$1.0M
FY2022	$358K
FY2023	$458K
FY2024	$338K
FY2025	$1.1M

Expenses by fiscal year
FY2020	$600K
FY2021	$184K
FY2022	$520K
FY2023	$599K
FY2024	$283K
FY2025	$760K

Net assets by fiscal year
FY2020	$1.4M
FY2021	$2.3M
FY2022	$1.9M
FY2023	$1.8M
FY2024	$2.0M
FY2025	$2.4M

Is it real?

Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Sep 1994.

IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File

Where the money goes

79 cents of each dollar spent went to programs.

79%

17%

Program services 79% · $471K Management & general 17% · $101K Fundraising 5% · $27K

Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.

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Who runs it and what they're paid

12 people listed on the 990; $91K paid to officers and key staff.

Part VII, Section A · reportable compensation

Jennifer Whitman

Executive Director

$91,410Pt VII · Sec A

Monica Woodall

Board Member

$0Pt VII · Sec A

Destiny Bachman

Board Member

$0Pt VII · Sec A

Kiowana Phillips

Board Member

$0Pt VII · Sec A

Kathryn Kraus

Board Member

$0Pt VII · Sec A

Austin Halls

Board Member

$0Pt VII · Sec A

Jon Fisher

Board Member

$0Pt VII · Sec A

Jacob Licht

President

$0Pt VII · Sec A

Jennifer Whitman’s $95K as Executive Director is at the 27th percentile of top reported officer pay among 1690 $1–10M philanthropy & grantmaking nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.

Compensation history total reportable pay by year · 1 named individual · Part VII

Name	FY2025	FY2024	FY2023	FY2022
Jennifer Whitman	$95,392	$90,018	$91,410	$83,350

Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.

See Moebius Syndrome Foundation executive salaries →

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Questions the 990 asks

The form asks each of these directly. These are the filed answers.

Family or business ties among officersPt VI · Ln 2No
Top official's pay set by an independent reviewPt VI · Ln 15aNo

Programs and updates

Supports individuals with Moebius syndrome, raises awareness, and advocates for research.

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Provided by the organization

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3 programs · $471K · in their own filed words · FY2023

01

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.

$315Kprogram expense

02

Advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

$135Kprogram expense

03

To provide college scholarships to students with Moebius Syndrome.

$21Kprogram expense

Funders

Who pays for it.

From grant filings on record. Receipts are incomplete: individual donors are never listed.

Grants

Schedule I · received and paid

Grants received · FY2024

Paypal Charitable Giving FundFY2024$5K

Jablon Family Foundation CorpFY2024$3K

The C & J Flanigan Family Fndtn INC Formerly Flanigan Family Fndtn INCFY2024$1K

Lilly Endowment INCFY2024$600

Total grants receivedfrom 4 funders$10K

See all 4 funders →

Grants paid · 27 grants · $530K · 2020–2025

Northwestern UniversityIL · FY2025$100,000

The Board of Regents University of WisconsinFY2025$100,000

Unitemized GrantFY2025$2,500

Unitemized GrantFY2025$1,148

Board of Regents of the University of NebraskaNE · FY2024$3,000

York College of PennsylvaniaPA · FY2024$3,000

Eckerd CollegeFL · FY2024$3,000

Oklahoma Wesleyan UniversityOK · FY2024$3,000

Oklahoma State University FoundationOK · FY2024$3,000

University of North FloridaFY2024$3,000

University of South FloridaFY2024$3,000

Indiana UniversityIN · FY2023$70,000

Citrus College FoundationCA · FY2023$3,000

University of Maryland CollegeFY2023$3,000

The George Washington UniversityVA · FY2023$3,000

University of HartfordCT · FY2023$3,000

Butler Community CollegeFY2023$3,000

Fayetteville State UniversityFY2023$3,000

See all 27 grants →

By the numbers

The FY2023 990, line by line.

Download 990

from philanthropy.org

1The main four

Money inPt VIII

$458K

Ln 12

Gifts and grantsLn 1h$322K

Investment incomeLn 3$68K

Fees for servicesLn 2g$66K

Money outPt IX

$599K

Ln 25

Programscol B$471K

Managementcol C$101K

Fundraisingcol D$27K

Owns and owesPt X

$1.8M

net assets · Ln 32

Cash and savingsLn 1–2$38K

Total assetsLn 16$1.8M

LiabilitiesLn 26$3K

PeoplePt VI, VII

12

listed · VII A

PaidVII A1

Voting boardVI 1a11

IndependentVI 1b11

2In more detail

Revenue in detailPt VIII

Gifts and grantsLn 1h$322K

Fees for servicesLn 2g$66K

Investment incomeLn 3$68K

Other incomeLn 4–11$2K

Total revenueLn 12$458K

Assets in detailPt X, end of year

CashLn 1$38K

Cash and savings togetherLn 1–2$38K

InvestmentsLn 11–13$1.8M

Total assetsLn 16$1.8M

LiabilitiesLn 26$3K

Net assetsLn 32$1.8M

OperationsPt I, VI

EmployeesI 52

VolunteersI 6111

Fiscal year endsHeaderDecember

Conflict-of-interest policyVI 12aYes

Whistleblower policyVI 13No

Records policyVI 14No

3Year over year

Balance sheet, start vs end of yearPt X · col A, B

Line	Start FY23	End FY23
Cash and savingsLn 1–2	$58K	$38K
InvestmentsLn 11–13	$1.8M	$1.8M
Total assetsLn 16	$1.9M	$1.8M
LiabilitiesLn 26	$46K	$3K
Net assetsLn 32	$1.9M	$1.8M

4Every line

Statement of functional expensesPt IX · every line

Line	Total	Programs	Management	Fundraising
Grants to domestic organizationsLn 1	$91K	$91K
Pay of current officers, directors and key staffLn 5	$91K	$33K	$45K	$13K
Other salaries and wagesLn 7	$40K	$40K
Payroll taxesLn 10	$10K	$6K	$4K	$1K
Legal feesLn 11b	$250		$250
Accounting feesLn 11c	$13K		$13K
Investment management feesLn 11f	$13K		$13K
Other fees for servicesLn 11g	$50K	$40K	$10K
Advertising and promotionLn 12	$16K	$3K	$19	$13K
Office expensesLn 13	$14K	$3K	$11K
TravelLn 17	$15K	$14K	$628
Conferences, conventions and meetingsLn 19	$208K	$208K
InsuranceLn 23	$2K	$224	$2K
Other expenses (24a–d)Ln 24	$36K	$33K	$2K
Total functional expensesLn 25	$599K	$471K	$101K	$27K

Filing history

Year	Money in	Money out	In minus out	Net assets	Download
FY2025 Latest	$1.1M	$760K	$312K	$2.4M	990 PDF
FY2024	$338K	$283K	$55K	$2.0M	990 PDF
FY2023 Viewing	$458K	$599K	−$141K	$1.8M	990 PDF
FY2022	$358K	$520K	−$161K	$1.9M	990 PDF
FY2021	$1.0M	$184K	$854K	$2.3M	990 PDF
FY2020	$104K	$600K	−$496K	$1.4M	990 PDF

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Schedules filed Part IV

III · Programs I · Grants R · Related orgs G · Fundraising L · Interested persons A · Public support F · Foreign M · Noncash

See the full FY2023 990 (6 parts)

Part I · Summary $458,300 revenue, 12 lines filed

I-8 Contributions and grantsPrior year $240,979$322,045

I-9 Program service revenuePrior year $69,422$66,366

I-10 Investment incomePrior year $47,724$68,250

I-11 Other revenuePrior year $0$1,639

I-12 Total revenuePrior year $358,125$458,300

I-13 Grants and similar amounts paidPrior year $12,000$91,000

I-14 Benefits paid to membersPrior year $0$0

I-15 Salaries and benefitsPrior year $129,224$141,482

I-16a Professional fundraising feesPrior year $0$0

I-17 Other expensesPrior year $378,303$366,777

I-18 Total expensesPrior year $519,527$599,259

I-19 Revenue less expensesPrior year −$161,402−$140,959

Part VI · Governance 11 of 11 board members independent, 3 to look at

VI-1a Voting members of the governing body11

VI-1b Independent voting members11

VI-13 Written whistleblower policyNo

VI-14 Document retention and destruction policyNo

VI-15a Process for setting top official's payNo

VI-2 Family or business relationship among officers or directorsNo

VI-12a Written conflict of interest policyYes

Part VIII · Statement of revenue $458,300 across 6 lines filed

VIII-1f All other contributions, gifts and grants$322,045

VIII-1h Total contributions, gifts and grants$322,045

VIII-2a-f Program service revenue, itemized rows (sum of 2a–2f as filed)Related to mission $66,366$66,366

VIII-3 Investment incomeExcluded from tax $68,250$68,250

VIII-11a-d Other revenue, itemized rows (sum of 11a–11d as filed)Excluded from tax $1,639$1,639

VIII-12 Total revenueRelated to mission $66,366 · Unrelated business $0 · Excluded from tax $69,889$458,300

Part IX · Statement of functional expenses $599,259 across 14 lines filed

IX-1 Grants to domestic organizationsPrograms $91,000$91,000

IX-5 Pay of current officers, directors and key staffPrograms $33,315 · Management $45,051 · Fundraising $13,044$91,410

IX-7 Other salaries and wagesPrograms $39,775$39,775

IX-10 Payroll taxesPrograms $5,737 · Management $3,536 · Fundraising $1,024$10,297

IX-11b Legal feesManagement $250$250

IX-11c Accounting feesManagement $13,200$13,200

IX-11f Investment management feesManagement $13,182$13,182

IX-11g Other fees for servicesPrograms $39,858 · Management $9,984$49,842

IX-12 Advertising and promotionPrograms $2,995 · Management $19 · Fundraising $12,964$15,978

IX-13 Office expensesPrograms $2,828 · Management $10,969$13,797

IX-17 TravelPrograms $14,234 · Management $628$14,862

IX-19 Conferences, conventions and meetingsPrograms $207,935$207,935

IX-23 InsurancePrograms $224 · Management $1,926$2,150

IX-24 Other expenses (24a–d)Programs $33,421 · Management $2,160$35,581

IX-25 Total functional expensesPrograms $471,322 · Management $100,905 · Fundraising $27,032$599,259

Part X · Balance sheet $1,833,572 assets, 9 lines filed

X-1 Cash, non-interest-bearingStart of year $58,401$38,239

X-11 Publicly traded securitiesStart of year $1,779,720$1,795,333

X-16 Total assetsStart of year $1,898,826$1,833,572

X-17 Accounts payable and accrued expensesStart of year $5,514$3,086

X-26 Total liabilitiesStart of year $45,653$3,086

X-27 Net assets without donor restrictionsStart of year $1,782,261$1,829,634

X-28 Net assets with donor restrictionsStart of year $70,912$852

X-32 Total net assets or fund balancesStart of year $1,853,173$1,830,486

X-33 Total liabilities and net assetsStart of year $1,898,826$1,833,572

Part XI · Reconciliation of net assets $1,830,486 net assets at year end

XI-1 Total revenue$458,300

XI-2 Total expenses$599,259

XI-3 Revenue less expenses−$140,959

XI-4 Net assets at start of year$1,853,173

XI-5 Net unrealized gains (losses) on investments$118,272

XI-9 Other changes in net assets$0

XI-10 Net assets at end of year$1,830,486

Form 990 e-file (XML) FY2023 from the IRS · Classification, formation year and address from the IRS Business Master File

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Moebius Syndrome Foundation FY2023 filing

Before you give

Is it real?

Where the money goes

Who runs it and what they're paid

Compensation history total reportable pay by year · 1 named individual · Part VII

Questions the 990 asks

Programs and updates

Questions for Moebius Syndrome Foundation

Funders

Grants

By the numbers

Filing history

Schedules filed Part IV