Find a cure, find treatments, provide therapeutics, advocating for patients, and supporting families for FOXG1 Syndrome.

501(c)(3) charity; gifts are tax-deductible.
95¢ of each $1 spent went to programs.
Run by 7 volunteers.
Mission: Form 990 Part I, line 1 · Status: IRS Pub. 78 · Programs: Part IX · People: Part I, lines 5–6

Before you give

FY2025 · Form 990Independent: from IRS data, not the org
Download 990
IRS status
501(c)(3)
not on the IRS revocation list
Looks good: listed by the IRS and not on the revocation list.
IRS BMF · Auto-Revocation List
Tax-deductible gifts
Yes
Donations are tax-deductible
Looks good: the IRS lists gifts to it as deductible.
IRS Pub. 78 · IRS BMF
Latest return
FY2025
latest Form 990
Looks good: the latest return is for FY2025, 1 tax year back; within 2 tax years.
IRS e-file · Filing history
Surplus or deficit
5 of 6
filings with a surplus
Average surplus $1.0M a year · 32% of revenue · last 6 filings
Fine: a surplus in 5 of the last 6 filings.
Pt I · Ln 19 · 6 filings
Spent on programs
95%
of spending
Looks good: 95% of spending went to programs; 75% or more.
Pt IX · Ln 25 · col B
Pay to officers and key staff
$208K
to officers and key staff · 3% of spending
Looks good: pay to officers and key staff is 3% of spending; 15% or less.
Pt VII · Sec A
5 mo
of spending, in cash
Looks good: 5.2 months of spending in cash; 3 or more.
Pt X · Ln 1–2 · Pt I · Ln 18
Named funders
15
named funders · $561K
Looks good: 15 funders name it on their filings; 3 or more.
Funders’ Sch. I, 990-PF
Liabilities
$234K
4% of total assets
Looks good: liabilities are 4% of assets; 50% or less.
Pt X · Ln 26
Independent board members
4
of 4 voting members
Looks good: 4 of 4 voting members are independent, a majority.
Pt VI · Ln 1a–1b
Looks goodFineWorth a lookConcernNo data yetTap a box for the reason.
Revenue
$6.9M
+4% vs prior year
Spent
$6.4M
To programs
95%
Net assets
$6.1M
By yearFY2020–FY2025
Revenue
$6.9M
FY2025▲ +4%
Tap a bar for its year
Revenue by fiscal year
FY2020$906K
FY2021$2.8M
FY2022$991K
FY2023$1.8M
FY2024$6.6M
FY2025$6.9M
Expenses
$6.4M
FY2025▲ +76%
Tap a bar for its year
Expenses by fiscal year
FY2020$329K
FY2021$1.0M
FY2022$1.2M
FY2023$973K
FY2024$3.7M
FY2025$6.4M
Net assets
$6.1M
FY2025▲ +4%
Tap a bar for its year
Net assets by fiscal year
FY2020$674K
FY2021$2.5M
FY2022$2.1M
FY2023$2.9M
FY2024$5.9M
FY2025$6.1M

From the FY2025 Form 990 · figures checked against the IRS filing · see the original

Give Claim

Is it real?

Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Oct 2018.

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

Where the money goes

95 cents of each dollar spent went to programs.

Program services 95% · $6.1M Management & general 4% · $270K Fundraising 0% · $29K

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

Something off? Claim to add context

Who runs it and what they're paid

5 people listed on the 990; $208K paid to officers and key staff.

Part VII, Section A · reportable compensation
Executive Director
$208,494Pt VII · Sec A
$0Pt VII · Sec A
CEO and Chair
$0Pt VII · Sec A
$0Pt VII · Sec A
$0Pt VII · Sec A

Nicole Johnson’s $208K as Executive Director is at the 77th percentile of top reported officer pay among 733 $1–10M diseases & disorders 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

NameFY2025FY2024FY2023FY2022
Nicole Johnson$208,494$180,000$162,500$118,667

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 Foxg1 Research INC executive salaries →

On this list? Claim this org

Something off? Claim to add context

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

Fund research, advocate for patients, and support families affected by FOXG1 Syndrome.

Questions for Foxg1 Research INC

Tap to ask. Foxg1 Research INC sees how many people are interested.

Your first name shows with your question. Foxg1 Research INC answers here, for everyone.

Provided by the organization

Know this org? Add your story

1 program · $6.1M · in their own filed words · FY2025
01

Fund research to find a cure.

$6.1Mprogram 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
See all 15 funders →
Grants paid · 23 grants · $3.9M · 2020–2025
University of BuffaloFY2025$651,800
University of BuffaloFY2024$920,000
University of BuffaloFY2023$299,983
University of Ca DavisFY2023$66,271
Gunma UniversityFY2023$40,000
The Research Institute at NatOH · FY2023$25,997
Synthego CorporationFY2023$21,356
Unitemized GrantFY2023$7,334
University of BuffaloFY2022$600,000
The Research Institute at NatOH · FY2022$54,000
University of Ca DavisFY2022$28,264
Synthego CorporationFY2022$24,775
Individual RecipientFY2022$21,637
Unitemized GrantFY2022$14,371
University of BuffaloFY2021$600,000
Individual RecipientFY2021$150,000
See all 23 grants →

By the numbers

The FY2025 990, line by line.

1The main four
Money inPt VIII
$6.9M
Ln 12
Gifts and grantsLn 1h$6.6M
Fees for servicesLn 2g$139K
Investment incomeLn 3$131K
Money outPt IX
$6.4M
Ln 25
Programscol B$6.1M
Managementcol C$270K
Fundraisingcol D$29K
Owns and owesPt X
$6.1M
net assets · Ln 32
Cash and savingsLn 1–2$2.8M
Total assetsLn 16$6.4M
LiabilitiesLn 26$234K
PeoplePt VI, VII
5
listed · VII A
PaidVII A1
Voting boardVI 1a4
IndependentVI 1b4
2In more detail
Revenue in detailPt VIII
Gifts and grantsLn 1h$6.6M
Noncash giftsLn 1g$116K
Fees for servicesLn 2g$139K
Investment incomeLn 3$131K
Gains on assetsLn 7$70K
Total revenueLn 12$6.9M
Assets in detailPt X, end of year
CashLn 1$2.6M
SavingsLn 2$171K
Cash and savings togetherLn 1–2$2.8M
InvestmentsLn 11–13$933K
Land, buildings, equipmentLn 10c$0
Other assetsLn 15$0
Total assetsLn 16$6.4M
LiabilitiesLn 26$234K
Net assetsLn 32$6.1M
OperationsPt I, VI
EmployeesI 50
VolunteersI 67
Fiscal year endsHeaderDecember
Conflict-of-interest policyVI 12aNo
Whistleblower policyVI 13No
Records policyVI 14No
3Year over year
Balance sheet, start vs end of yearPt X · col A, B
LineStart FY25End FY25
Cash and savingsLn 1–2$2.8M$2.8M
InvestmentsLn 11–13$1.5M$933K
Land, buildings, equipmentLn 10c$0
Total assetsLn 16$5.9M$6.4M
LiabilitiesLn 26$0$234K
Net assetsLn 32$5.9M$6.1M
4Every line
Statement of functional expensesPt IX · every line
LineTotalProgramsManagementFundraising
Grants to domestic organizationsLn 1$652K$652K
Grants to domestic individualsLn 2$0
Grants and assistance to foreign recipientsLn 3$0
Benefits paid to or for membersLn 4$0
Pay of current officers, directors and key staffLn 5$208K$208K
Pay of disqualified personsLn 6$0
Other salaries and wagesLn 7$0
Pension plan contributionsLn 8$0
Other employee benefitsLn 9$0
Payroll taxesLn 10$0
Management feesLn 11a$448K$448K
Legal feesLn 11b$3K$3K
Accounting feesLn 11c$23K$23K
Lobbying feesLn 11d$0
Professional fundraising feesLn 11e$29K$29K
Investment management feesLn 11f$0
Other fees for servicesLn 11g$4.9M$4.9M
Advertising and promotionLn 12$28K$28K
Office expensesLn 13$29K$29K
Information technologyLn 14$0
RoyaltiesLn 15$0
OccupancyLn 16$0
TravelLn 17$25K$25K
Travel and entertainment for public officialsLn 18$0
Conferences, conventions and meetingsLn 19$4K$4K
InterestLn 20$0
Payments to affiliatesLn 21$0
Depreciation, depletion and amortizationLn 22$0
InsuranceLn 23$593$593
Other expenses (24a–d)Ln 24$36K$999$35K
All other expensesLn 24e$0
Total functional expensesLn 25$6.4M$6.1M$270K$29K

Filing history

YearMoney inMoney outIn minus outNet assetsDownload
FY2025 Latest Viewing $6.9M$6.4M$434K$6.1M 990 PDF
FY2024 $6.6M$3.7M$2.9M$5.9M 990 PDF
FY2023 $1.8M$973K$806K$2.9M 990 PDF
FY2022 $991K$1.2M−$244K$2.1M 990 PDF
FY2021 $2.8M$1.0M$1.8M$2.5M 990 PDF
FY2020 $906K$329K$577K$674K 990 PDF

More to add? Claim this org

Schedules filed Part IV

III · Programs R · Related orgs G · Fundraising L · Interested persons I · Grants A · Public support M · Noncash J · Pay O · Explanations
See the full FY2025 990 (6 parts)
Part I · Summary $6,865,223 revenue, 12 lines filed
I-8 Contributions and grantsPrior year $6,564,658$6,599,684
I-9 Program service revenue$138,983
I-10 Investment incomePrior year $46,736$131,395
I-11 Other revenuePrior year −$3,797−$4,839
I-12 Total revenuePrior year $6,607,597$6,865,223
I-13 Grants and similar amounts paidPrior year $1,226,351$651,800
I-14 Benefits paid to members$0
I-15 Salaries and benefitsPrior year $180,000$208,494
I-16a Professional fundraising feesPrior year $160,060$28,592
I-17 Other expensesPrior year $2,094,732$5,541,984
I-18 Total expensesPrior year $3,661,143$6,430,870
I-19 Revenue less expensesPrior year $2,946,454$434,353
Part VI · Governance 4 of 4 board members independent, 4 to look at
VI-1a Voting members of the governing body4
VI-1b Independent voting members4
VI-12a Written conflict of interest policyNo
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
Part VIII · Statement of revenue $6,865,223 across 10 lines filed
Lines not itemized here account for −$4,839 of total revenue; see the IRS return.
VIII-1f All other contributions, gifts and grants$6,599,684
VIII-1g Noncash contributions (included above)$115,819
VIII-1h Total contributions, gifts and grants$6,599,684
VIII-2a-f Program service revenue, itemized rows (sum of 2a–2f as filed)Related to mission $138,983$138,983
VIII-3 Investment incomeExcluded from tax $61,437$61,437
VIII-5 Royalties$0
VIII-6 Net rental income or loss$0
VIII-7 Net gain or loss on sales of assetsExcluded from tax $69,958$69,958
VIII-8 Net income from fundraising events$0
VIII-12 Total revenueRelated to mission $138,983 · Excluded from tax $126,556$6,865,223
Part IX · Statement of functional expenses $6,430,870 across 31 lines filed
IX-1 Grants to domestic organizationsPrograms $651,800$651,800
IX-2 Grants to domestic individuals$0
IX-3 Grants and assistance to foreign recipients$0
IX-4 Benefits paid to or for members$0
IX-5 Pay of current officers, directors and key staffManagement $208,494$208,494
IX-6 Pay of disqualified persons$0
IX-7 Other salaries and wages$0
IX-8 Pension plan contributions$0
IX-9 Other employee benefits$0
IX-10 Payroll taxes$0
IX-11a Management feesPrograms $448,029$448,029
IX-11b Legal feesManagement $3,035$3,035
IX-11c Accounting feesManagement $23,083$23,083
IX-11d Lobbying fees$0
IX-11e Professional fundraising feesFundraising $28,592$28,592
IX-11f Investment management fees$0
IX-11g Other fees for servicesPrograms $4,944,886$4,944,886
IX-12 Advertising and promotionPrograms $28,199$28,199
IX-13 Office expensesPrograms $29,327$29,327
IX-14 Information technology$0
IX-15 Royalties$0
IX-16 Occupancy$0
IX-17 TravelPrograms $24,706$24,706
IX-18 Travel and entertainment for public officials$0
IX-19 Conferences, conventions and meetingsPrograms $4,480$4,480
IX-20 Interest$0
IX-21 Payments to affiliates$0
IX-22 Depreciation, depletion and amortization$0
IX-23 InsuranceManagement $593$593
IX-24 Other expenses (24a–d)Programs $999 · Management $34,647$35,646
IX-24e All other expenses$0
IX-25 Total functional expensesPrograms $6,132,426 · Management $269,852 · Fundraising $28,592$6,430,870
Part X · Balance sheet $6,354,594 assets, 19 lines filed
X-1 Cash, non-interest-bearingStart of year $822,474$2,600,117
X-2 Savings and temporary cash investmentsStart of year $1,963,227$171,335
X-3 Pledges and grants receivableStart of year $1,650,000$2,650,000
X-4 Accounts receivable$0
X-8 Inventories for sale or use$0
X-9 Prepaid expenses and deferred charges$0
X-10c Land, buildings and equipment, net$0
X-11 Publicly traded securitiesStart of year $1,454,474$933,142
X-12 Other securities$0
X-13 Program-related investments$0
X-14 Intangible assets$0
X-15 Other assets$0
X-16 Total assetsStart of year $5,890,175$6,354,594
X-17 Accounts payable and accrued expenses$234,371
X-26 Total liabilitiesStart of year $0$234,371
X-27 Net assets without donor restrictionsStart of year $5,815,175$6,095,223
X-28 Net assets with donor restrictionsStart of year $75,000$25,000
X-32 Total net assets or fund balancesStart of year $5,890,175$6,120,223
X-33 Total liabilities and net assetsStart of year $5,890,175$6,354,594
Part XI · Reconciliation of net assets $6,120,223 net assets at year end
XI-1 Total revenue$6,865,223
XI-2 Total expenses$6,430,870
XI-3 Revenue less expenses$434,353
XI-4 Net assets at start of year$5,890,175
XI-5 Net unrealized gains (losses) on investments$61,788
XI-6 Donated services and use of facilities−$20,785
XI-8 Prior period adjustments−$245,308
XI-10 Net assets at end of year$6,120,223

Form 990 e-file (XML) FY2025 from the IRS · Classification, formation year and address from the IRS Business Master File

Similar organizations you could support · Compare with another nonprofit

Names, privacy, and removal requests More

The names, titles, and compensation shown on this page are reproduced from IRS Form 990 filings, which are public records.

Philanthropy.org does not alter the content of those filings. All information appears exactly as reported by the filing organization for the tax year shown.

We publish only information contained in the public IRS filing — and less than the filing contains. Our profile pages do not display street addresses, telephone numbers, personal email addresses, or other personal contact information, even where the filing includes them.

Many people share the same name. A name shown on this page reflects only what one organization reported in one IRS filing for one tax year. It should not be interpreted as identifying any other individual with the same or a similar name.

If you are no longer affiliated with the organization, your name will generally stop appearing in future IRS filings once the organization no longer reports you. Pages for tax years in which you were reported remain published because those filings remain part of the public record.

Philanthropy.org does not alter or remove IRS filing records. Removing a page from this website would not remove the underlying IRS filing, which remains publicly available from the IRS and other publishers of the same information.

If you believe the IRS filing itself is inaccurate, corrections must be made by the filing organization or the IRS directly.

Your org? Add context

Made it to the end? Claim this org

All figures are derived from public IRS Form 990 filings and are presented without evaluation of any organization. philanthropy.org does not rate, score, or rank organizations, including the pay comparisons above.