Phelan Mcdermid Syndrome Foundation logo

Phelan Mcdermid Syndrome Foundation

OSPREY, FL EIN: 04-3673104 Website

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

5states

Cities

BostonClemsonCoral GablesNew YorkSaint RobertScarsdale

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Qualifying Distributions
Net Investment Income
$0$395K$791K$1M$2M20202021202220232024
Metric202420232022
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

$0$68K$136K$204K$271K0 grants20201 grants20211 grants20224 grants20233 grants2024

Grant Insights

How this funder distributes its grants

Top Recipients

Top 3 recipients in 2024

Boston Children's Hospital$116KSeaver Autism Center$100KNortheastern University$55K

Grant Size Distribution

9 grants across all recorded years

3<$50K3$50–100K3$100–250K$250–500K$500K–1M$1–5M$5M+

Open Grants

3 open opportunities from Phelan Mcdermid Syndrome Foundation

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).

RecipientPurposeAmount
Boston Children's Hospital Boston, MATo 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, MATo 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, NYTo 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

Rhonda BlumenthalChief Executive Officer$122K

From 2024 filing

NameTitleHoursCompensation
Rhonda BlumenthalChief Executive Officer40$122,244
Denise CrodenPresident5
Ben HolocherVice President5
Lisa BrownSecretary5
Michael CentoTreasurer5
Catherine Valcourt-PearceDirector5
Chardell BuchananDirector5
Eden RiveraDirector5
Dr Lori LeviDirector5
Heidi Grabenstatter PhDDirector5

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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