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.
Phelan McDermid Syndrome Foundation at a glance
In short: Phelan McDermid Syndrome Foundation gave $100K across 1 grant in 2025 (avg $100K), mostly in California. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $100,000
- -63.2% vs 2024
- Grants made (2025)
- 1
- -66.7% vs 2024
- Average grant
- $100,000
- +10.5% vs 2024
- Median grant
- $100,000
- Total assets
- $2,220,653
- +5.3% vs 2024
- Primary geography
- California (100% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Phelan McDermid Syndrome Foundation
Open Grants
3 open opportunities from Phelan McDermid Syndrome Foundation
PMSF Innovation Award (Early Career Investigator)
Phelan McDermid Syndrome Foundation
Amount
Varies
Deadline
Deadline not published
PMSF Shannon O’Boyle Memorial Grant – Neuropsychiatric Illness
Phelan McDermid Syndrome Foundation
Amount
Varies
Deadline
Deadline not published
PMSF Translational Research Award
Phelan McDermid Syndrome Foundation
Amount
Varies
Deadline
Deadline not published
Who Phelan McDermid Syndrome Foundation funds
How this funder distributes its grants
Top Recipients
Top recipient in 2025
The largest 2025 recipient was Children's Hospital of Los Angeles ($100K).
Grant Size Distribution
10 grants across all recorded years
The most common grant size was in the $100–250K range: 4 grants of 10 (40%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2025 grant dollars on its one itemized grant.
Cities
How Phelan McDermid Syndrome Foundation gives
- Giving grew 378% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2021 to 2025, annual grant giving ranged from $12K (2021) to $271K (2024). In 2025 it made 1 grant totaling $100K.
Grants by year
Grant recipients and amounts by year
| 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 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $2,220,653 | $1,245,861 | $1,082,374 | $100,000 | 1 | $96,976 |
| 2024 | $2,109,869 | $1,306,884 | $1,437,564 | $271,392 | 3 | $44,888 |
| 2023 | $2,243,009 | $1,062,761 | $1,098,819 | $220,000 | 4 | $14,095 |
| 2022 | $2,113,920 | $853,648 | $715,263 | $20,900 | 1 | $-8,775 |
| 2021 | $1,940,384 | $897,002 | $497,424 | $11,688 | 1 | $123 |
| 2020 | $1,639,670 | $560,200 | $455,390 | — | — | $886 |
| 2019 | $1,427,059 | $656,384 | $578,555 | — | — | $6,163 |
About Phelan McDermid Syndrome Foundation
Based on IRS filings
Phelan McDermid Syndrome Foundation is a public charity 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
Leadership & Key People
Officers and directors from IRS filings
Phelan McDermid Syndrome Foundation is led by Rhonda Blumenthal, Chief Executive Officer since 2021 (on filings since 2019); 5 of 14 officers listed in 2025 are compensated.
Officers on the 2025 filing
Rhonda Blumenthal
Chief Executive Officer
Executive Director → Chief Executive Officer, 2021
On filings since 2019
40 hrs/week
$88K (2019) → $30K (2025)
Diane Linnehan
Chief Operating Officer & Co-Interim CEO
New on the 2025 filing
40 hrs/week
$117K (2025)
Shira Johnson
Chief Development Officer & Co-Interim CEO
New on the 2025 filing
40 hrs/week
$54K (2025)
Denise Croden
President
Director → Vice President, 2022
Vice President → President, 2023
On filings since 2021
5 hrs/week
No compensation reported
Catherine Valcourt-Pearce
Director
Secretary → Director, 2022
On filings since 2020
2 hrs/week
No compensation reported
Heidi Grabenstatter PhD
Director
Director → Secretary, 2022
Secretary → Director, 2024
On filings since 2021
2 hrs/week
No compensation reported
Eden Rivera
Director
On filings since 2023
2 hrs/week
No compensation reported
Lori Levi
Director
On filings since 2024
2 hrs/week
No compensation reported
Rebecca Buchanan
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Lauren Schmitt
Chief Science Officer
New on the 2025 filing
40 hrs/week
$108K (2025)
Priscilla Hackstadt
Chief Financial Officer
New on the 2025 filing
16 hrs/week
$48K (2025)
Lisa Brown
Secretary
Director → Vice President, 2023
Vice President → Secretary, 2024
On filings since 2022
5 hrs/week
No compensation reported
Ben Holocher
Vice President
On filings since 2024
5 hrs/week
No compensation reported
Michael Cento
Treasurer
On filings since 2024
5 hrs/week
No compensation reported
Former officers (10)
- Former: Chardell Buchanan (2024) — Director
- Former: Chris Jauch (2019–2023) — Treasurer
- Former: Alycia Halladay (2020–2023) — Director
- Former: Mike Fraunces (2022–2023) — Director
- Former: Cynthia Schauss (2020–2022) — Director
- Former: Michael O'Boyle (2020–2022) — Treasurer
- Former: Joseph Sammartino (2019–2020) — President
- Former: Nick Assendelft (2019) — Vice President
- Former: Susan Lomas (2019) — President
- Former: Veronica Frunzi (2019) — Secretary
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $117K, to Diane Linnehan (Chief Operating Officer/Co-interim CEO). 5 officers or directors reported compensation on that filing.
Frequently asked questions about Phelan McDermid Syndrome Foundation
How much does Phelan McDermid Syndrome Foundation give each year?
Phelan McDermid Syndrome Foundation gave $100K across 1 grant in 2025, according to its 2025 IRS Form 990. In 2024 it gave $271K across 3 grants.
How large is Phelan McDermid Syndrome Foundation?
Phelan McDermid Syndrome Foundation reported $2.2M in total assets on its 2025 IRS Form 990. Its revenue that year was $1.2M.
What is Phelan McDermid Syndrome Foundation?
Phelan McDermid Syndrome Foundation is a public charity focused on Medical Research, based in Osprey, FL. It holds $2.2M in total assets as of 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 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.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2021 (received by the IRS March 9, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS March 10, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS March 1, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS March 13, 2025)
- Updated Form 990 for fiscal year 2025 (received by the IRS March 10, 2026)
- IRS filings on file for fiscal years 2019–2025
Live grants for the work Phelan McDermid Syndrome Foundation funds
Medical Research Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Phelan McDermid Syndrome Foundation's focus areas in our free grants database
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Figures come from Phelan McDermid Syndrome Foundation's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
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