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.
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 61 reported grant relationships connected to this organization totaling approximately $1.3M.
EIN: 043673104
Osprey, FL
Specifically Named Diseases Research
NTEE: H80
Latest filing: 2025
Total Revenue$1.2M
Total Expenses$1.1M
Total Assets$2.2M
Grant Records61
Funding Total$1.3M
Filing Years2021–2025
Where $100 goes at Phelan McDermid Syndrome Foundation
How Phelan McDermid Syndrome Foundation divides every $100 it spends, from its own Form 990 filings, averaged across 9 years.
$69
Programs
the work itself
$19
Management
running the organization
$12
Fundraising
raising the next dollar
Inside the $69 for programs
$34
CURE (Driving Research Breakthroughs)
$19
CONNECT (Family Support)
$16
CARE (Improving Medical Care)
Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.
Sample Grants Received
Health and Human Services
$60,000
GENERAL OPERATIONS
$22,988
GENERAL SUPPORT
$5,173
HEALTH & WELLNESS
$100,000
GENERAL SUPPORT
$40,685
Showing up to 5 of 61 total records — full history available with membership.
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
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.