Phelan Mcdermid Syndrome Foundation

Nonprofit profile at a glance

EIN
043673104
IRS 990 coverage
2011–2025
Forms available
Form 990 2025
Location
Osprey, FL, USA
Phone
9414858000
Rating
74
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Specifically Named Diseases Research

Reported finances

Revenue
$1,245,861
Expenses
$1,082,374
Assets
$2,220,653
Liabilities
$154,468

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

14 people listed

Executive titles in this filing

  • Diane Linnehan (Chief Operating Officer/Co-interim CEO)
  • Shira Johnson (Chief Development Officer/Co-Interim CEO)
  • Rhonda Blumenthal (Chief Executive Officer)
  • Denise Croden (President)
  • Ben Holocher (Vice President)

Highest reported compensation

  • Diane Linnehan (Chief Operating Officer/Co-interim CEO): $120,416 total reported compensation
  • Lauren Schmitt (Chief Science Officer): $111,366 total reported compensation
  • Shira Johnson (Chief Development Officer/Co-Interim CEO): $56,013 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2025

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.

Operating model

Revenue model
Donor-supported. 76% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 85% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. The filing does not identify recipients for some grant dollars and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 57
  • Transparency & Controls: 77
  • Accountability: 100
  • Sustainability: 54
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 60.3%; rating input score 60
  • Program expense ratio: 65.5%; rating input score 66
  • Fundraising efficiency: $5.34 raised per $1 spent on fundraising; rating input score 17; 17th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.3%; rating input score 93; 24th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 50%; rating input score 50; 33rd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 9 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 13.1%; rating input score 62; 62nd percentile among comparable filings
  • Total-asset coverage ratio: 2.05; rating input score 65; 65th percentile among comparable filings
  • Liabilities to assets ratio: 0.07; rating input score 39; 39th percentile among comparable filings
  • Officer compensation ratio: 34.1%; rating input score 6; 6th percentile among comparable filings

Growth

  • Program expense growth: 2.2% per year; rating input score 100; 23rd percentile among comparable filings
  • Revenue growth: 4.9% per year; rating input score 100; 37th percentile among comparable filings
  • Asset growth: 10.3% per year; rating input score 100; 56th percentile among comparable filings

Details

  • Where the money goes: 60.3% of revenue deployed · 65.5% of spending went to programs
  • Governance: 8 of 8 board members independent · 9 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $709K in reported program spending
  • Leadership: top reported pay $120K · 14 people listed
  • Consistency: 46 of 47 current checks pass · 1 finding to review
  • Schedules: 7 filed schedules · includes major donors and grants
  • Filing history: 15 filing years from 2011 to 2025
  • Contacts: How to reach this organization
  • Money network: 6 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Review — Transparency & Controls: Grant itemization coverage scored 50/100.
  • High — Financial Efficiency: Fundraising efficiency scored 17/100.
  • High — Sustainability: Officer compensation ratio scored 6/100.
  • Review — Transparency & Controls: Foreign grants require schedule f did not reconcile in the filed values.
  • Moderate — Sustainability: Liabilities to assets ratio scored 39/100.