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.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$2.1M
-5.9% YoY
Annual Giving
$271K
+23.4% YoY
Grant Count
3
-25.0% YoY
Avg Grant Size
$90K
+64.5% 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 2020 through 2024. As of 2024, the organization holds $2.1M in total assets. In 2024, it awarded 3 grants totaling $271K. Net investment income was $45K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $2,109,869 | $2,243,009 | $2,113,920 |
| Revenue | $1,306,884 | $1,062,761 | $853,648 |
| Expenses | $1,437,564 | $1,098,819 | $715,263 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $44,888 | $14,095 | $-8,775 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 3 recipients in 2024
Grant Size Distribution
9 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 2024 grants, the largest include Boston Children's Hospital ($116,392), Seaver Autism Center ($100,000), Northeastern University ($55,000).
| Recipient | Purpose | Amount |
|---|---|---|
| Boston Children's Hospital Boston, MA | To support the conclusion of the second phase of the Developmental Synaptopathies Consortium's Phelan-McDermid syndrome natural history study, including Boston Children's Hospital personnel costs and subawards to Icahn Mount Sinai Medical Center and Rush University for personnel costs as well. | $116,392 |
| Northeastern University Boston, MA | To support a project seeking to expand a new natural communication sampling protocol called ROSCO (Rapid Online Sample of Communication). ROSCO is designed to elicit meaningful samples of communication from individuals with Phelan McDermid syndrome via online-video platforms like Zoom in approximately 15 minutes. This study will validate the ROSCO paradigm with the Phelan McDermid syndrome population longitudinally, using repeated samples to establish reliability and sensitivity to communication change over time. | $55,000 |
| Seaver Autism Center New York, NY | To fund the further development of the Phelan-McDermid syndrome Inventory for Psychiatric Symptoms (PIPS) tool, to better support individuals with Phelan McDermid syndrome and their caregivers with managing and intervening in neuropsychiatric episodes experienced by these individuals. | $100,000 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| Rhonda Blumenthal | Chief Executive Officer | 40 | $122,244 |
| Denise Croden | President | 5 | — |
| Ben Holocher | Vice President | 5 | — |
| Lisa Brown | Secretary | 5 | — |
| Michael Cento | Treasurer | 5 | — |
| Catherine Valcourt-Pearce | Director | 5 | — |
| Chardell Buchanan | Director | 5 | — |
| Eden Rivera | Director | 5 | — |
| Dr Lori Levi | Director | 5 | — |
| Heidi Grabenstatter PhD | Director | 5 | — |
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 $2.1M in total assets as of 2024.
How large is Phelan Mcdermid Syndrome Foundation?
As of 2024, Phelan Mcdermid Syndrome Foundation holds $2.1M in total assets with $1.3M in annual revenue. It awarded 3 grants totaling $271K in 2024.
Where does Phelan Mcdermid Syndrome Foundation operate?
Phelan Mcdermid Syndrome Foundation has awarded grants in Florida, Massachusetts, Missouri, New York, South Carolina.
What size grants does Phelan Mcdermid Syndrome Foundation award?
In 2024, Phelan Mcdermid Syndrome Foundation awarded 3 grants totaling $271K — an average of about $90K 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 2020–2024.
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 April 2026. Sourced from IRS Form 990-PF filings.
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