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Passes our checks

Phelan Mcdermid Syndrome Foundation

EIN 04-3673104 · Osprey, FL

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong95 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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.

Income
$1.2 million
Spending
$1.1 million
Spent on programs
66%
Reserves
22.9 months of spending
Largest source of income
donations and private grants, 76%
Employees
12
Volunteers
50
Highest pay
$120,416, chief operating officer/co-interim ceo

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 95 out of 100. Higher than 76% of charities in its peer group (medical research, $1m to $10m).

  • Reserves

    35 of 35

    Spendable reserves would cover 22.9 months of spending.

  • Debt

    20 of 20

    It owes 7% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 13% of income.

  • Income trend

    10 of 15

    Income fell 5% on the year before.

  • Spending floor

    15 of 15

    66% of spending went to programs and raising each dollar of donations cost 19 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 64% of charities in its peer group (medical research, $1m to $10m).

  • Independent board

    25 of 25

    8 of 8 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $192,052 spent. 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.
  2. $168,860 spent. CARE (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.
  3. $348,155 spent. CURE (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.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since April 2003.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.