PHELAN MCDERMID SYNDROME FOUNDATION

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Financial Vulnerability Assessment (Tuckman-Chang)

4 risk indicators measuring financial stability and operational resilience

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Financial Trends

Organization Details

Formation Year

2002

Legal Domicile

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.

Program Service Accomplishments

Program 1

Expenses: $192,052 Revenue: $0

CONNECT (Family Support): The Organization (PMSF) connects with families from diagnosis throughout their life journey, providing essential support, knowledge, and skills to navigate the complexities of Phelan Mc-Dermid syndrome. In 2025, PMSF provided 2,400 connections through comprehensive support services, welcoming 300 new families into membership. Key initiatives included supporting 133 newly diagnosed families via the "First 100 Days" program, educating 250 caregivers and professionals through the "Pathways" video series, and facilitating 48 Caregiver Support Group sessions for 250 participants. These programs integrate mental health, social, and emotional well-being, while regional and international gatherings further empower our community to thrive.

Program 2

Expenses: $168,860 Revenue: $0

CARE (Improving Medical Care): The Organization (PMSF) ensures that individuals with Phelan-McDermid syndrome have access to a robust community of specialists and evidence-based care. We bridge the gap between research and clinical practice by educating professionals, facilitating medical consultation, and expanding our specialized clinical infrastructure. In 2025, we strengthened this ecosystem by establishing our first 11 Phelan-McDermid Syndrome Clinics-including a new multidisciplinary center at Cincinnati Children's Hospital Medical Center-and launched initiatives to grow our Healthcare Provider (HCP) network. Our experts facilitated 22 neuropsychiatric consultation cases, 15 neuropsychiatric referrals, and 50 genetic counseling referrals. Additionally, we served as a primary medical hub, recording over 100,000 views on pmsf.org and overseeing 3,500 downloads of clinical and educational resource documents.

Program 3

Expenses: $348,155 Revenue: $14,143

CURE (Driving Research Breakthroughs): The Organization (PMSF) accelerates scientific discovery by centering the patient experience in research, expanding our clinical data infrastructure, and...

CURE (Driving Research Breakthroughs): The Organization (PMSF) accelerates scientific discovery by centering the patient experience in research, expanding our clinical data infrastructure, and providing critical funding. In 2025, our grant committee awarded the Shannon O'Boyle Memorial Grant to Dr. Jonathan Santoro (Children's Hospital of Los Angeles) to advance vital neuropsychiatric biomarker research. We expanded the PMSF DataHub to 1,500 consented participants and 1,400 curated genetic reports, creating an invaluable resource for pharmaceutical and clinical partners. Furthermore, we directly facilitated participation in the Developmental Synaptopathies Consortium natural history study by providing travel reimbursements to 24 families. Our commitment to global knowledge-sharing was underscored by the PMSF podcast, which experienced 500% growth and reached audiences in 30 countries.

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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%)

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

Financial Distress Indicator

Liquidity & Cash Position

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Altman Z-Score • Liquidity Ratios • Solvency Analysis • Growth Indicators • Efficiency Metrics

Governance

Voting Members

Independent Members

Employees

Volunteers

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

$368,578

Total Directors

Key Employees

Highest Compensated

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