Phelan McDermid Syndrome Foundation
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.
Key facts about Phelan McDermid Syndrome Foundation
- EIN
- 04-3673104
- Latest 990 filing
- Form 990-PF, 2025
- Annual giving (2025)
- $100,000
- Grants made (2025)
- 1
- Average grant
- $100,000
- Median grant
- $100,000
- Total assets
- $2,220,653
- Primary geography
- California (100% of itemized 2025 grant dollars)
Data from IRS Form 990-PF, 2025; updated September 2026.
How Phelan McDermid Syndrome Foundation gives
- Giving grew 378% from 2022 to 2025. Method
From the foundation's IRS Form 990-PF filings. Methodology.
Next steps with Phelan McDermid Syndrome Foundation
- How to evaluate Phelan McDermid Syndrome Foundation as a funder
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Financial Overview
From 2025 IRS Form 990-PF · View filing
Total Assets
$2.2M
+5.3% YoY
Annual Giving
$100K
-63.2% YoY
Grant Count
1
-66.7% YoY
Avg Grant Size
$100K
+10.5% YoY
About Phelan McDermid Syndrome Foundation
Based on IRS filings
Phelan McDermid Syndrome Foundation is a nonprofit organization focused on Medical Research, based in Osprey, FL. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $2.2M in total assets. In 2025, it awarded 1 grant totaling $100K. Net investment income was $97K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of all 1 itemized 2025 grant dollars.
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $2,220,653 | $2,109,869 | $2,243,009 |
| Revenue | $1,245,861 | $1,306,884 | $1,062,761 |
| Expenses | $1,082,374 | $1,437,564 | $1,098,819 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $96,976 | $44,888 | $14,095 |
| Distributable Amount | — | — | — |
Data update history
When this profile's IRS filing data changed on Grantable
- IRS filings on file for fiscal years 2019–2025
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 1 recipients in 2025
Grant Size Distribution
10 grants across all recorded years
Open Grants
3 open opportunities from Phelan McDermid Syndrome Foundation
PMSF Innovation Award (Early Career Investigator)
Phelan McDermid Syndrome Foundation
Amount
Varies
Deadline
Rolling / Open
PMSF Shannon O’Boyle Memorial Grant – Neuropsychiatric Illness
Phelan McDermid Syndrome Foundation
Amount
Varies
Deadline
Rolling / Open
PMSF Translational Research Award
Phelan McDermid Syndrome Foundation
Amount
Varies
Deadline
Rolling / Open
Giving History
Grant recipients and amounts by year
Among its reported 2025 grants, the largest recipients include Children's Hospital of Los Angeles ($100,000).
| Recipient | Purpose | Amount |
|---|---|---|
| Children's Hospital of Los Angeles Los Angeles, CA | To identify diagnostic biomarkers in up to 30 individuals with Phelan-McDermid syndrome who present with neuropsychiatric disease. To determine whether these individuals exhibit distinct cytokine, proteomic, and metabolomic profiles in the serum and cerebrospinal fluid indicative of systemic and/or central inflammation. To evaluate markers of cortical and white matter disruption using magnetic resonance imaging and electroencephalography. | $100,000 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2025 IRS filing
From 2025 IRS filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| Diane Linnehan | Chief Operating Officer/Co-interim CEO | 40 | $117,089 |
| Lauren Schmitt | Chief Science Officer | 40 | $108,138 |
| Shira Johnson | Chief Development Officer/Co-Interim CEO | 40 | $54,382 |
| Priscilla Hackstadt | Chief Financial Officer | 16 | $48,022 |
| Rhonda Blumenthal | Chief Executive Officer | 40 | $30,446 |
| Denise Croden | President | 5 | — |
| Ben Holocher | Vice President | 5 | — |
| Lisa Brown | Secretary | 5 | — |
| Michael Cento | Treasurer | 5 | — |
| Catherine Valcourt-Pearce | Director | 2 | — |
| Rebecca Buchanan | Director | 2 | — |
| Eden Rivera | Director | 2 | — |
| Dr Lori Levi | Director | 2 | — |
| Heidi Grabenstatter PhD | Director | 2 | — |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Phelan McDermid Syndrome Foundation?
Phelan McDermid Syndrome Foundation is a nonprofit organization focused on Medical Research, based in Osprey, FL. It holds $2.2M in total assets as of 2025.
How large is Phelan McDermid Syndrome Foundation?
As of 2025, Phelan McDermid Syndrome Foundation holds $2.2M in total assets with $1.2M in annual revenue. It awarded 1 grant totaling $100K in 2025.
Where does Phelan McDermid Syndrome Foundation operate?
Phelan McDermid Syndrome Foundation has awarded grants in California, Florida, Massachusetts, Missouri, New York, South Carolina.
What size grants does Phelan McDermid Syndrome Foundation award?
In 2025, Phelan McDermid Syndrome Foundation awarded 1 grant totaling $100K — an average of about $100K per grant, based on its IRS Form 990 filings.
What is Phelan McDermid Syndrome Foundation's EIN?
Phelan McDermid Syndrome Foundation's EIN (Employer Identification Number) is 04-3673104. IRS Form 990 filing data is available on this page for 2019–2025.
Explore Open Grants
Browse active grant opportunities in Phelan McDermid Syndrome Foundation's focus areas in our free grants database
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Data last updated September 2026. Sourced from IRS Form 990-PF filings.