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Shine Syndrome Foundation

Tax-deductible

Fairfield, CT501(c)(3)Since 2021Diseases & DisordersEIN 87-4703593Revenue $380K in FY2025

On file with the IRSdlg4shine.org2775 Orchard Run Rd, 06824-0000 · Fairfield, CTTax-exempt since Mar 2022Publicly supported charity — 170(b)(1)(A)(vi)

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Our mission is to improve the lives of individuals with DLG4-related Synaptopathy by supporting research, developing treatments and therapies, and providing a community of support. We understand the challenges that families face when dealing with this rare disease, and we are committed to making a difference. By collaborating with researchers, healthcare professionals, and other organizations, we aim to accelerate medical advances focused on the treatment of DLG4 Synaptopathy.

501(c)(3) charity; gifts are tax-deductible.
100¢ of each $1 spent went to programs.
Mission: Form 990 Part I, line 1 · Status: IRS Pub. 78 · Programs: Part IX

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
Spent on programs
100%
of spending
Looks good: 100% of spending went to programs; 75% or more.
Pt IX · Ln 25 · col B
Cash reserves
20 mo
of spending, in cash
Looks good: 20.3 months of spending in cash; 3 or more.
Pt X · Ln 1–2 · Pt I · Ln 18
Named funders
4
named funders · $13K
Looks good: 4 funders name it on their filings; 3 or more.
Funders’ Sch. I, 990-PF
Liabilities
$0
total owed
No data yet: the filing does not give total assets.
Pt X · Ln 26
Independent board members
10
of 10 voting members
Looks good: 10 of 10 voting members are independent, a majority.
Pt VI · Ln 1a–1b
Looks goodFineWorth a lookConcernNo data yetTap a box for the reason.
Revenue
$380K
+211% vs prior year
Spent
$188K
To programs
100%
Net assets
$0
By yearFY2022–FY2025
Revenue
$380K
FY2025▲ +211%
Tap a bar for its year
Revenue by fiscal year
FY2022$108K
FY2023$84K
FY2024$122K
FY2025$380K
Net assets
$0
FY2025▼ -100%
Tap a bar for its year
Net assets by fiscal year
FY2022$99K
FY2023$34K
FY2024$126K
FY2025$0

From the FY2025 Form 990 · see the original

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Is it real?

Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Mar 2022.

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

Where the money goes

100 cents of each dollar spent went to programs.

Program services 100% · $188K

Form 990 Part IX, line 25. Every line is in By the numbers.

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Who runs it and what they're paid

10 people listed on the 990.

Part VII, Section A · reportable compensation
Tim Stuart
Co-President
$0Pt VII · Sec A
$0Pt VII · Sec A
Payal Patel
Vice President of Development
$0Pt VII · Sec A
Melanie Queen
Treasurer
$0Pt VII · Sec A
Sabrina Merchant MD
Director of Science and Clinical
$0Pt VII · Sec A
$0Pt VII · Sec A
Valerie Stewart
Grant Writer
$0Pt VII · Sec A
Dana Opar
Director of Marketing
$0Pt VII · Sec A
See Shine 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

Programs and updates

Shine Syndrome Foundation is a disease and medical nonprofit based in Fairfield, CT, formed in 2021.

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Provided by the organization

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3 programs · $182K · in their own filed words · FY2025
01

Research Asset Development (iPSC, Mouse, and Rat Development)

$115Kprogram expense
02

2025 DLG4 SHINE Research & Family Conference

$66Kprogram expense
03

Medical Considerations Documents sent to members who are affected by DLG4 SHINE syndrome.

$624program expense

Funders

Who pays for it.

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

Grants

Schedule I · funders on record
Grants received · FY2023
American Online Giving Foundation INCFY2023$11K
Robert H and Susan F Castellini FoundationFY2023$1K
Amazonsmile FoundationFY2023$388
Amica Companies FoundationFY2023$175
Total grants receivedfrom 4 funders$13K
See all 4 funders →

By the numbers

The FY2025 990, line by line.

Download 990
from philanthropy.org
1The main four
Money inPt VIII
$380K
Ln 12
Gifts and grantsLn 1h$335K
Fees for servicesLn 2g$42K
Investment incomeLn 3$2K
Money outPt IX
$188K
Ln 25
Programscol B$188K
Owns and owesPt X
$0
net assets · Ln 32
Cash and savingsLn 1–2$318K
LiabilitiesLn 26$0
PeoplePt VI, VII
10
listed · VII A
PaidVII A0
Voting boardVI 1a10
IndependentVI 1b10
2In more detail
Revenue in detailPt VIII
Gifts and grantsLn 1h$335K
Government grantsLn 1e$0
Noncash giftsLn 1g$0
Fundraising eventsLn 1c$0
Fees for servicesLn 2g$42K
Investment incomeLn 3$2K
Total revenueLn 12$380K
Assets in detailPt X, end of year
CashLn 1$202K
SavingsLn 2$116K
Cash and savings togetherLn 1–2$318K
InvestmentsLn 11–13$0
Land, buildings, equipmentLn 10c$0
Other assetsLn 15$0
LiabilitiesLn 26$0
Net assetsLn 32$0
OperationsPt I, VI
EmployeesI 50
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
LineStart FY25End FY25
Cash and savingsLn 1–2$126K$318K
InvestmentsLn 11–13$0$0
Land, buildings, equipmentLn 10c$0$0
Total assetsLn 16$126K$318K
LiabilitiesLn 26$0$0
Net assetsLn 32$126K$318K
4Every line
Statement of functional expensesPt IX · every line
LineTotalProgramsManagementFundraising
Other fees for servicesLn 11g$0$0
Advertising and promotionLn 12$666$666
Office expensesLn 13$1K$1K
Conferences, conventions and meetingsLn 19$69K$69K
InsuranceLn 23$764$764
Other expenses (24a–d)Ln 24$116K$116K
Total functional expensesLn 25$188K$188K$0$0

Filing history

YearMoney inMoney outIn minus outNet assetsDownload
FY2025 Latest Viewing $380K$188K$191K$0 990 PDF
FY2024 $122K$126K 990 PDF
FY2023 $84K$34K 990 PDF
FY2022 $108K$99K 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 FY2025 990 (6 parts)
Part I · Summary $379,505 revenue, 12 lines filed
I-8 Contributions and grants$335,056
I-9 Program service revenue$42,474
I-10 Investment income$1,975
I-11 Other revenue$0
I-12 Total revenuePrior year $0$379,505
I-13 Grants and similar amounts paid$0
I-14 Benefits paid to members$0
I-15 Salaries and benefits$0
I-16a Professional fundraising fees$0
I-17 Other expenses$188,050
I-18 Total expensesPrior year $0$188,050
I-19 Revenue less expensesPrior year $0$191,455
Part VI · Governance 10 of 10 board members independent, 2 to look at
VI-1a Voting members of the governing body10
VI-1b Independent voting members10
VI-13 Written whistleblower policyNo
VI-14 Document retention and destruction policyNo
VI-2 Family or business relationship among officers or directorsNo
VI-12a Written conflict of interest policyYes
Part VIII · Statement of revenue $379,505 across 12 lines filed
VIII-1a Federated campaigns$0
VIII-1b Membership dues$0
VIII-1c Fundraising events$0
VIII-1d Related organizations$0
VIII-1e Government grants$0
VIII-1f All other contributions, gifts and grants$306,930
VIII-1g Noncash contributions (included above)$0
VIII-1h Total contributions, gifts and grants$335,056
VIII-2a-f Program service revenue, itemized rows (sum of 2a–2f as filed)Related to mission $42,474$42,474
VIII-3 Investment incomeRelated to mission $1,975$1,975
VIII-8 Net income from fundraising events$0
VIII-12 Total revenueRelated to mission $44,449 · Unrelated business $0 · Excluded from tax $0$379,505
Part IX · Statement of functional expenses $188,050 across 6 lines filed
IX-11g Other fees for servicesPrograms $0$0
IX-12 Advertising and promotionPrograms $666$666
IX-13 Office expensesPrograms $1,451$1,451
IX-19 Conferences, conventions and meetingsPrograms $68,715$68,715
IX-23 InsurancePrograms $764$764
IX-24 Other expenses (24a–d)Programs $116,454$116,454
IX-25 Total functional expensesPrograms $188,050 · Management $0 · Fundraising $0$188,050
Part X · Balance sheet $317,567 assets, 24 lines filed
X-1 Cash, non-interest-bearingStart of year $110,858$201,538
X-2 Savings and temporary cash investmentsStart of year $15,254$116,029
X-3 Pledges and grants receivableStart of year $0$0
X-4 Accounts receivableStart of year $0$0
X-8 Inventories for sale or useStart of year $0$0
X-9 Prepaid expenses and deferred chargesStart of year $0$0
X-10c Land, buildings and equipment, netStart of year $0$0
X-11 Publicly traded securitiesStart of year $0$0
X-12 Other securitiesStart of year $0$0
X-13 Program-related investmentsStart of year $0$0
X-14 Intangible assetsStart of year $0$0
X-15 Other assetsStart of year $0$0
X-16 Total assetsStart of year $126,112$317,567
X-17 Accounts payable and accrued expensesStart of year $0$0
X-18 Grants payableStart of year $0$0
X-19 Deferred revenueStart of year $0$0
X-20 Tax-exempt bond liabilitiesStart of year $0$0
X-24 Unsecured notes and loans payableStart of year $0$0
X-25 Other liabilitiesStart of year $0$0
X-26 Total liabilitiesStart of year $0$0
X-27 Net assets without donor restrictionsStart of year $0$0
X-28 Net assets with donor restrictionsStart of year $0$0
X-32 Total net assets or fund balancesStart of year $126,112$317,567
X-33 Total liabilities and net assetsStart of year $126,112$317,567
Part XI · Reconciliation of net assets $0 net assets at year end
XI-1 Total revenue$379,505
XI-2 Total expenses$188,050
XI-3 Revenue less expenses$191,455
XI-10 Net assets at end of year$0

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

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