PHELAN MCDERMID SYNDROME FOUNDATION

EIN: 043673104 501(c)(3) Medical Research

Osprey, FL

Total Revenue
$1,245,861
Total Expenses
$1,082,374
Total Assets
$2,220,653
Net Assets
$2,066,185
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
2002
Legal Domicile
FL
Principal Officer
Priscilla Hackstadt
Phone
9414858000
Tax Period
2025-01-01 to 2025-12-31

PHELAN MCDERMID SYNDROME FOUNDATION, founded in 2002, is a community nonprofit in the Medical Research sector that reported $1.2M in total revenue in fiscal year 2025. Expenses of $1.1M left a modest 13% surplus.

Mission

The mission of the Phelan-McDermid Syndrome Foundation is to make today better and the future brighter for everyone living with Phelan-McDermid syndrome - from the moment of diagnosis to the delivery of treatments and cures.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2025)

Revenue Breakdown

Contributions & Grants $1,060,585
Program Service Revenue $14,143
Investment Income $96,976
Other Revenue $74,157
TOTAL REVENUE $1,245,861

Expense Breakdown

Grants Paid $105,000
Salaries & Benefits $608,197
Fundraising Expenses $198,735
Program Expenses $709,067
Other Expenses $369,177
TOTAL EXPENSES $1,082,374

Year-over-Year Comparison

2025 2024 Change
Revenue $1,245,861 $1,306,884 0.0%
Expenses $1,082,374 $1,437,564 -0.2%
Net Income $163,487 $-130,680 -2.3%
Key Indicators
✓ Grants to Organizations ✗ Grants to Individuals ✓ Lobbying ✗ Political Activity ✗ Foreign Activities ✗ Donor Advised Fund ✓ Schedule B Required
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Financial Health Indicators

Comprehensive financial analysis: Altman Z-Score, liquidity, solvency, sustainability, efficiency, and growth metrics

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Liquidity & Cash Position

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Governance

Voting Members
8
Independent Members
8
Employees
12
Volunteers
50

Governance Policies

✓ Conflict of Interest Policy
✓ Whistleblower Policy
✓ Document Retention Policy

Special Practices & Reported Activities

✗ Operated a School
✗ Operated a Hospital
✗ Provided First Class Travel
✗ Reported Conflict of Interest
✗ Reported Asset Diversion
✗ Excess Benefit Transaction
✗ Made Political Expenditures
✓ Engaged in Lobbying
✗ Operated Donor Advised Fund
✗ Maintained Art Collections
✗ Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
9
$368,578
Total Directors
9
$0
Key Employees
0
$0
Highest Compensated
2
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Diane Linnehan Chief Operating Officer/Co-interim CEO 40
Officer Highest
$117,089 $3,327 $120,416
Lauren Schmitt Chief Science Officer 40
Officer Highest
$108,138 $3,228 $111,366
Shira Johnson Chief Development Officer/Co-Interim CEO 40
Officer
$54,382 $1,631 $56,013
Priscilla Hackstadt Chief Financial Officer 16
Officer
$48,022 $1,402 $49,424
Rhonda Blumenthal Chief Executive Officer 40
Officer
$30,446 $913 $31,359
Denise Croden President 5
Officer Director
$0 $0 $0
Ben Holocher Vice President 5
Officer Director
$0 $0 $0
Lisa Brown Secretary 5
Officer Director
$0 $0 $0
Michael Cento Treasurer 5
Officer Director
$0 $0 $0
Catherine Valcourt-Pearce Director 2
Director
$0 $0 $0
Rebecca Buchanan Director 2
Director
$0 $0 $0
Eden Rivera Director 2
Director
$0 $0 $0
Dr Lori Levi Director 2
Director
$0 $0 $0
Heidi Grabenstatter PhD Director 2
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $1,245,861 $1,082,374 $2,220,653 $163,487
2024 $1,306,884 $1,437,564 $2,109,869 $-130,680
2023 $1,062,761 $1,098,819 $2,243,009 $-36,058
2022 $853,648 $715,263 $2,113,920 $138,385
2021 $897,002 $497,424 $1,940,384 $399,578
2020 $560,200 $455,390 $1,639,670 $104,810
2019 $656,384 $578,555 $1,427,059 $77,829
2018 $1,199,078 $899,420 $1,423,117 $299,658
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