Lumind Idsc Foundation: FY2021 Nonprofit Profile & Form 990 (EIN 37-1483975)

Name	FY2025	FY2024	FY2023	FY2022	FY2021	FY2020
Hampus Hillerstrom	$296,406	$293,219	$286,161	$318,264	$278,723	$313,978
Lois Kelly	$235,746	$168,170	—	—	—	—
Angela Britton	—	—	$208,000	$213,833	—	—
Dr James Hendrix	—	—	—	$211,409	$181,202	$170,105
Michelle Petronio	$172,068	$164,874	$162,311	$163,933	$156,294	$128,032
Richard a Fisher	—	$129,600	—	—	—	—
Katherine O'Neill	$108,466	$103,128	$94,103	—	—	—
Angella Britton	—	—	—	—	$105,250	—

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.

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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 15aYes

Programs and updates

Accelerates research and empowers families to improve health and independence for people with Down syndrome.

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Provided by the organization

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3 programs · $2.5M · in their own filed words · FY2020

01

Ds-Ctn

Support medical research that will result in treatments to significantly improve health and independence in persons with down syndrome.

$1.3Mprogram expense

02

Community engagement program for research awareness and participation participation and empowering families with resources, medical information and research participation opportunities. Includes costs related to lumind idsc's my down syndrome community platform (mydsc).

$1.0Mprogram expense

03

Research and medical grants program lumind idsc research and medical grants program supported 10 projects this year covering projects in COVID19, gene thereapy, independence, medical care and regulatory.

$217Kprogram 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

Valley Fund Charitable FoundationFY2024$1.0M

Morgan Stanley Global Impact Funding Trust INCFY2024$200K

American Endowment FoundationFY2024$82K

Donor Advised Charitable Giving INCFY2024$77K

Rainwater Charitable FoundationFY2024$50K

American Online Giving Foundation INCFY2024$39K

Fidelity Investments Charitable Gift FundFY2024$35K

Greater HorizonsFY2024$28K

Total grants receivedfrom 17 funders$1.6M

See all 17 funders →

Grants paid · 17 grants · $3.4M · 2019–2024

Unitemized GrantFY2024$764,779

The Rand CorporationCA · FY2021$170,000

Individual RecipientFY2021$150,000

Dsc2uFY2021$90,000

Advocate Health ResourcesFY2021$37,000

Down Syndrome Clinical Trials Network Multiple GrantsFY2020$1,290,000

Uconn Health - PinterFY2020$100,000

Dsc2uFY2020$45,000

Advocate Health ResourcesFY2020$30,000

Emory Group ReturnGA · FY2020$27,000

Gdpr IT Governance USA INCFY2020$15,000

Down Syndrome Clinical Trials Network Multiple GrantsFY2019$451,723

Massachusetts Institute of TechnologyMA · FY2019$110,000

Uconn Health - PinterFY2019$65,000

UcsdFY2019$50,000

Stanford UniversityFY2019$18,750

University of ArizonaFY2019$7,500

By the numbers

The FY2021 990, line by line.

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1The main four

Money inPt VIII

$5.3M

Ln 12

Gifts and grantsLn 1h$5.1M

Other incomeLn 4–11$153K

Investment incomeLn 3$2K

Money outPt IX

$3.4M

Ln 25

Programscol B$2.5M

Managementcol C$360K

Fundraisingcol D$471K

Owns and owesPt X

$2.7M

net assets · Ln 32

Cash and savingsLn 1–2$1.6M

Total assetsLn 16$4.5M

LiabilitiesLn 26$1.7M

PeoplePt VI, VII

16

listed · VII A

PaidVII A4

Voting boardVI 1a15

IndependentVI 1b15

2In more detail

Revenue in detailPt VIII

Gifts and grantsLn 1h$5.1M

Government grantsLn 1e$324K

Investment incomeLn 3$2K

Other incomeLn 4–11$153K

Total revenueLn 12$5.3M

Assets in detailPt X, end of year

CashLn 1$915K

SavingsLn 2$637K

Cash and savings togetherLn 1–2$1.6M

Land, buildings, equipmentLn 10c$216K

Other assetsLn 15$29K

Total assetsLn 16$4.5M

LiabilitiesLn 26$1.7M

Net assetsLn 32$2.7M

OperationsPt I, VI

EmployeesI 512

VolunteersI 60

Fiscal year endsHeaderSeptember

Conflict-of-interest policyVI 12aYes

Whistleblower policyVI 13Yes

Records policyVI 14Yes

3Year over year

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

Line	Start FY21	End FY21
Cash and savingsLn 1–2	$283K	$1.6M
Land, buildings, equipmentLn 10c	$237K	$216K
Total assetsLn 16	$2.5M	$4.5M
LiabilitiesLn 26	$1.6M	$1.7M
Net assetsLn 32	$841K	$2.7M

4Every line

Statement of functional expensesPt IX · every line

Line	Total	Programs	Management	Fundraising
Grants to domestic organizationsLn 1	$1.5M	$1.5M
Pay of current officers, directors and key staffLn 5	$895K	$647K	$50K	$198K
Pay of disqualified personsLn 6	$152K	$21K	$36K	$96K
Pension plan contributionsLn 8	$40K	$25K	$3K	$11K
Other employee benefitsLn 9	$101K	$80K	$11K	$10K
Payroll taxesLn 10	$92K	$58K	$8K	$26K
Legal feesLn 11b	$89K	$40K	$6K	$43K
Accounting feesLn 11c	$87K		$87K
Other fees for servicesLn 11g	$30K		$30K
Advertising and promotionLn 12	$22K	$22K
Office expensesLn 13	$51K	$23K	$18K	$10K
Information technologyLn 14	$118K	$70K	$9K	$40K
OccupancyLn 16	$45K	$32K	$4K	$9K
Conferences, conventions and meetingsLn 19	$4K	$4K		$8
Depreciation, depletion and amortizationLn 22	$66K		$66K
InsuranceLn 23	$28K		$28K
Other expenses (24a–d)Ln 24	$39K	$6K	$6K	$28K
All other expensesLn 24e	$3K	$2K	$254	$510
Total functional expensesLn 25	$3.4M	$2.5M	$360K	$471K

Filing history

Year	Money in	Money out	In minus out	Net assets	Download
FY2026 Latest	$0	$541	−$541	$0	990 PDF
FY2025	$2.8M	$3.3M	−$527K	$147K	990 PDF
FY2024	$4.0M	$4.0M	$48K	$674K	990 PDF
FY2023	$3.2M	$4.0M	−$820K	$626K	990 PDF
FY2022	$2.7M	$4.7M	−$2.0M	$1.4M	990 PDF
FY2021 Viewing	$5.3M	$3.4M	$1.9M	$2.7M	990 PDF
FY2020	$1.9M	$2.6M	−$707K	$841K	990 PDF

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Schedules filed Part IV

III · Programs R · Related orgs G · Fundraising L · Interested persons I · Grants J · Pay O · Explanations

See the full FY2021 990 (6 parts)

Part I · Summary $5,267,215 revenue, 12 lines filed

I-8 Contributions and grantsPrior year $1,577,945$5,112,405

I-9 Program service revenuePrior year $0$0

I-10 Investment incomePrior year $1,301$1,503

I-11 Other revenuePrior year $284,585$153,307

I-12 Total revenuePrior year $1,863,831$5,267,215

I-13 Grants and similar amounts paidPrior year $1,020,395$1,507,000

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

I-15 Salaries and benefitsPrior year $956,058$1,279,452

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

I-17 Other expensesPrior year $594,339$581,474

I-18 Total expensesPrior year $2,570,792$3,367,926

I-19 Revenue less expensesPrior year −$706,961$1,899,289

Part VI · Governance 15 of 15 board members independent, no flags

VI-1a Voting members of the governing body15

VI-1b Independent voting members15

VI-2 Family or business relationship among officers or directorsNo

VI-12a Written conflict of interest policyYes

VI-13 Written whistleblower policyYes

VI-14 Document retention and destruction policyYes

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

Part VIII · Statement of revenue $5,267,215 across 6 lines filed

VIII-1e Government grants$324,071

VIII-1f All other contributions, gifts and grants$4,788,334

VIII-1h Total contributions, gifts and grants$5,112,405

VIII-3 Investment incomeExcluded from tax $1,503$1,503

VIII-8 Net income from fundraising eventsExcluded from tax $153,307$153,307

VIII-12 Total revenueRelated to mission $0 · Unrelated business $0 · Excluded from tax $154,810$5,267,215

Part IX · Statement of functional expenses $3,367,926 across 18 lines filed

IX-1 Grants to domestic organizationsPrograms $1,507,000$1,507,000

IX-5 Pay of current officers, directors and key staffPrograms $646,801 · Management $50,411 · Fundraising $197,710$894,922

IX-6 Pay of disqualified personsPrograms $20,763 · Management $35,514 · Fundraising $95,667$151,944

IX-8 Pension plan contributionsPrograms $25,200 · Management $3,244 · Fundraising $11,072$39,516

IX-9 Other employee benefitsPrograms $80,069 · Management $11,351 · Fundraising $10,021$101,441

IX-10 Payroll taxesPrograms $58,430 · Management $7,521 · Fundraising $25,678$91,629

IX-11b Legal feesPrograms $40,300 · Management $5,735 · Fundraising $43,216$89,251

IX-11c Accounting feesManagement $86,538$86,538

IX-11g Other fees for servicesManagement $29,657$29,657

IX-12 Advertising and promotionPrograms $22,218$22,218

IX-13 Office expensesPrograms $23,226 · Management $17,859 · Fundraising $9,876$50,961

IX-14 Information technologyPrograms $69,721 · Management $8,751 · Fundraising $39,844$118,316

IX-16 OccupancyPrograms $31,587 · Management $4,483 · Fundraising $9,018$45,088

IX-19 Conferences, conventions and meetingsPrograms $4,110 · Fundraising $8$4,118

IX-22 Depreciation, depletion and amortizationManagement $65,582$65,582

IX-23 InsuranceManagement $27,724$27,724

IX-24 Other expenses (24a–d)Programs $5,894 · Management $5,554 · Fundraising $28,021$39,469

IX-24e All other expensesPrograms $1,788 · Management $254 · Fundraising $510$2,552

IX-25 Total functional expensesPrograms $2,537,107 · Management $360,178 · Fundraising $470,641$3,367,926

Part X · Balance sheet $4,487,214 assets, 17 lines filed

X-1 Cash, non-interest-bearingStart of year $39,147$914,870

X-2 Savings and temporary cash investmentsStart of year $244,092$637,017

X-3 Pledges and grants receivableStart of year $1,823,377$2,655,533

X-4 Accounts receivableStart of year $2,925$0

X-9 Prepaid expenses and deferred chargesStart of year $85,191$34,321

X-10c Land, buildings and equipment, netStart of year $236,871$216,053

X-15 Other assetsStart of year $30,750$29,420

X-16 Total assetsStart of year $2,462,353$4,487,214

X-17 Accounts payable and accrued expensesStart of year $218,501$167,209

X-18 Grants payableStart of year $1,202,036$1,563,845

X-19 Deferred revenueStart of year $600$12,555

X-25 Other liabilitiesStart of year $200,060$3,160

X-26 Total liabilitiesStart of year $1,621,197$1,746,769

X-27 Net assets without donor restrictionsStart of year $117,205$832,028

X-28 Net assets with donor restrictionsStart of year $723,951$1,908,417

X-32 Total net assets or fund balancesStart of year $841,156$2,740,445

X-33 Total liabilities and net assetsStart of year $2,462,353$4,487,214

Part XI · Reconciliation of net assets $2,740,445 net assets at year end

XI-1 Total revenue$5,267,215

XI-2 Total expenses$3,367,926

XI-3 Revenue less expenses$1,899,289

XI-4 Net assets at start of year$841,156

XI-9 Other changes in net assets$0

XI-10 Net assets at end of year$2,740,445

Form 990 e-file (XML) FY2021 from the IRS · Classification, formation year and address from the IRS Business Master File

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Lumind Idsc Foundation FY2021 filing

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Compensation history total reportable pay by year · 8 named individuals · Part VII