Florida · Nonprofit
PHELAN MCDERMID SYNDROME FOUNDATION
PHELAN MCDERMID SYNDROME FOUNDATION (Florida) receives grants from 49 organizations whose IRS filings report $1,625,703 to it, the largest being THE COMMUNITY FOUNDATION OF SARASOTA CO INC ($484,422). 29 of them have funded it in more than one year, and 92% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $1.2M
- Funders on record
- 49
- Grants received
- $1.6M
- Net assets
- $2.1M
What Phelan McDermid Syndrome Foundation does
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.
As stated on its FY2025 Form 990.
Programs
CONNECT (Family Support): The Organization (PMSF) connects with families from diagnosis throughout their life journey, providing essential support, knowledge, and skills to navigate the complexities of Phelan Mc-Dermid syndrome. In 2025, PMSF provided 2,400 connections through comprehensive support services, welcoming 300 new families into membership. Key initiatives included supporting 133 newly diagnosed families via the "First 100 Days" program, educating 250 caregivers and professionals through the "Pathways" video series, and facilitating 48 Caregiver Support Group sessions for 250 participants. These programs integrate mental health, social, and emotional well-being, while regional and international gatherings further empower our community to thrive.
$192,052 spent27% of program spendingCARE (Improving Medical Care): The Organization (PMSF) ensures that individuals with Phelan-McDermid syndrome have access to a robust community of specialists and evidence-based care. We bridge the gap between research and clinical practice by educating professionals, facilitating medical consultation, and expanding our specialized clinical infrastructure. In 2025, we strengthened this ecosystem by establishing our first 11 Phelan-McDermid Syndrome Clinics-including a new multidisciplinary center at Cincinnati Children's Hospital Medical Center-and launched initiatives to grow our Healthcare Provider (HCP) network. Our experts facilitated 22 neuropsychiatric consultation cases, 15 neuropsychiatric referrals, and 50 genetic counseling referrals. Additionally, we served as a primary medical hub, recording over 100,000 views on pmsf.org and overseeing 3,500 downloads of clinical and educational resource documents.
$168,860 spent24% of program spendingCURE (Driving Research Breakthroughs): The Organization (PMSF) accelerates scientific discovery by centering the patient experience in research, expanding our clinical data infrastructure, and providing critical funding. In 2025, our grant committee awarded the Shannon O'Boyle Memorial Grant to Dr. Jonathan Santoro (Children's Hospital of Los Angeles) to advance vital neuropsychiatric biomarker research. We expanded the PMSF DataHub to 1,500 consented participants and 1,400 curated genetic reports, creating an invaluable resource for pharmaceutical and clinical partners. Furthermore, we directly facilitated participation in the Developmental Synaptopathies Consortium natural history study by providing travel reimbursements to 24 families. Our commitment to global knowledge-sharing was underscored by the PMSF podcast, which experienced 500% growth and reached audiences in 30 countries.
$348,155 spentof which $100,000 as grants$14,143 earned by the program49% of program spendingOther program services, not described on the e-filed return.
$0 spent0% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $709,067.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2020 to 2021, from $1.6M to $1.9M (+18%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2019 0% · 2020 0% · 2021 16% · 2022 2% · 2023 0% · 2024 2% · 2025 9%. Grants only. Government contracts and fees sit inside program revenue.
85% of PHELAN MCDERMID SYNDROME FOUNDATION’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Who funds it, year by year
2017 → 2023: the base broadened from 6 funders to 20 funders, grant income rose $214k → $240k.
19 of 49 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 92% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of PHELAN MCDERMID SYNDROME FOUNDATION’s funders (the co-funder graph). Top 30 of 49 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
PHELAN MCDERMID SYNDROME FOUNDATION has a broad base — no single funder exceeds 30% of grant income, and it takes 3 funders to reach half.
the vertical line marks half of all grant income — 3 funders to its left
94% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund PHELAN MCDERMID SYNDROME FOUNDATION.
Largest funder’s share by year: 2017 89% · 2018 40% · 2019 29% · 2020 47% · 2021 33% · 2022 37% · 2023 42% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
30% of PHELAN MCDERMID SYNDROME FOUNDATION's funders are still giving 3 years after their first grant; 59% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
92% of PHELAN MCDERMID SYNDROME FOUNDATION's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $132k that is directly attributable, 86% of it comes from funders outside Florida, across 15 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $1.5M arriving through sponsors registered in 15 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
PHELAN MCDERMID SYNDROME FOUNDATION holds deeper cash reserves than three-quarters of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Government funding PHELAN MCDERMID SYNDROME FOUNDATION receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $22k on record.
- Department of Health and Human Services$22k
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like PHELAN MCDERMID SYNDROME FOUNDATION
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Florida
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
66% of spending goes to programs.
Governance
Public support
76%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 36 states
Screen this organization
A dated, signed PDF of the compliance screen for PHELAN MCDERMID SYNDROME FOUNDATION: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds PHELAN MCDERMID SYNDROME FOUNDATION?
- PHELAN MCDERMID SYNDROME FOUNDATION (Florida) receives grants from 49 organizations whose IRS filings report $1,625,703 to it, the largest being THE COMMUNITY FOUNDATION OF SARASOTA CO INC ($484,422). 29 of them have funded it in more than one year, and 92% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does PHELAN MCDERMID SYNDROME FOUNDATION have?
- IRS filings report 49 organizations giving $1,625,703 in grants to PHELAN MCDERMID SYNDROME FOUNDATION, 29 of which have funded it in more than one year.
- Who is the largest funder of PHELAN MCDERMID SYNDROME FOUNDATION?
- THE COMMUNITY FOUNDATION OF SARASOTA CO INC is the largest funder on record, with $484,422 in grants. The full list of funders is on this page.
- How can an organization like PHELAN MCDERMID SYNDROME FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Florida. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 49 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing