Public Charity

PHELAN MCDERMID SYNDROME FOUNDATION

PHELAN MCDERMID SYNDROME FOUNDATION is a nonprofit organization categorized as Public Charity based in Osprey, FL. Its most recent IRS filing (2025) reports revenue of $1.2M, expenses of $1.1M, total assets of $2.2M. Imperigo tracks 56 reported grant relationships connected to this organization totaling approximately $1.2M.

EIN: 043673104 Osprey, FL Latest filing: 2025
Total Revenue$1.2M
Total Expenses$1.1M
Total Assets$2.2M
Grant Records56
Funding Total$1.2M
Filing Years2021–2025

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.

Officers & Directors

Vice President Ben Holocher
Director Catherine Valcourt-Pearce
President Denise Croden
Chief Operating Officer/Co-interim CEO Diane Linnehan
Director Dr Lori Levi
Director Eden Rivera

Officer compensation and complete director data available with membership.

Top Grant Purposes

GENERAL SUPPORT
$435,682 13 grants
HEALTH & WELLNESS
$200,000 2 grants
For grant recipient's exempt purposes
$104,088 8 grants
Unrestricted
$79,375 2 grants
HEALTH
$44,300 5 grants

Financial Trends

Year Revenue Expenses Assets
2025 $1.2M $1.1M $2.2M
2024 $1.3M $1.4M $2.1M
2023 $1.1M $1.1M $2.2M
2022 $854K $715K $2.1M
2021 $897K $497K $1.9M

Between 2021 and 2025, reported annual revenue grew from $897K to $1.2M (+39%), with total assets most recently reported at $2.2M.

Interactive year-over-year charts and full filing details available with membership.

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