Nonprofit · EIN 04-3673104
PHELAN MCDERMID SYNDROME FOUNDATION
Tax-exempt · OSPREY, FL 34229
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $1,245,861 | $1,082,374 | $163,487 | $2,220,653 | $154,468 | $2,066,185 |
| December 31, 2024 | 990 | $1,306,884 | $1,437,564 | -$130,680 | $2,109,869 | $210,527 | $1,899,342 |
| December 31, 2023 | 990 | $1,062,761 | $1,098,819 | -$36,058 | $2,243,009 | $216,181 | $2,026,828 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $1,060,585
- of which government grants
- $110,632
- Program service revenue
- $14,143
- Investment income
- $96,976
- Net income from fundraising events
- $73,622
- Other revenue
- $74,157
Expenses
- Grants and similar amounts paid
- $105,000
- Compensation of officers, directors and key employees
- $351,129
- Other salaries and wages
- $199,809
- Salaries, compensation and benefits (total)
- $608,197
- Professional fundraising fees
- $0
- Occupancy
- $8,100
- Travel
- $40,204
- Program services (functional)
- $709,067
- Management and general (functional)
- $174,572
- Fundraising (functional)
- $198,735
Balance sheet and other
- Total assets, start of year
- $2,109,869
- Total assets, end of year
- $2,220,653
- Total liabilities, end of year
- $154,468
- Net assets, end of year
- $2,066,185
- Publicly traded securities
- $401,144
- Net assets without donor restrictions
- $2,062,385
- Net assets with donor restrictions
- $3,800
- Gross receipts
- $1,245,861
- Employees
- 12
- Volunteers
- 50
- Year formed
- 2002
- State of legal domicile
- FL
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Diane Linnehan | Chief Operating Officer/Co-interim CEO Officer, Highest-paid employee | 40 | $117,089 | $3,327 |
| Lauren Schmitt | Chief Science Officer Officer, Highest-paid employee | 40 | $108,138 | $3,228 |
| Shira Johnson | Chief Development Officer/Co-Interim CEO Officer | 40 | $54,382 | $1,631 |
| Priscilla Hackstadt | Chief Financial Officer Officer | 16 | $48,022 | $1,402 |
| Rhonda Blumenthal | Chief Executive Officer Officer | 40 | $30,446 | $913 |
| Denise Croden | President Trustee or director, Officer | 5 | $0 | $0 |
| Ben Holocher | Vice President Trustee or director, Officer | 5 | $0 | $0 |
| Lisa Brown | Secretary Trustee or director, Officer | 5 | $0 | $0 |
| Michael Cento | Treasurer Trustee or director, Officer | 5 | $0 | $0 |
| Catherine Valcourt-Pearce | Director Trustee or director | 2 | $0 | $0 |
| Rebecca Buchanan | Director Trustee or director | 2 | $0 | $0 |
| Eden Rivera | Director Trustee or director | 2 | $0 | $0 |
| Dr Lori Levi | Director Trustee or director | 2 | $0 | $0 |
| Heidi Grabenstatter PhD | Director Trustee or director | 2 | $0 | $0 |
990 for the year ended December 31, 2024: 10 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Rhonda Blumenthal | Chief Executive Officer Officer, Key employee | 40 | $122,244 | $3,809 |
| Denise Croden | President Trustee or director, Officer | 5 | $0 | $0 |
| Ben Holocher | Vice President Trustee or director, Officer | 5 | $0 | $0 |
| Lisa Brown | Secretary Trustee or director, Officer | 5 | $0 | $0 |
| Michael Cento | Treasurer Trustee or director, Officer | 5 | $0 | $0 |
| Catherine Valcourt-Pearce | Director Trustee or director | 5 | $0 | $0 |
| Chardell Buchanan | Director Trustee or director | 5 | $0 | $0 |
| Eden Rivera | Director Trustee or director | 5 | $0 | $0 |
| Dr Lori Levi | Director Trustee or director | 5 | $0 | $0 |
| Heidi Grabenstatter PhD | Director Trustee or director | 5 | $0 | $0 |
990 for the year ended December 31, 2023: 9 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Rhonda Blumenthal | Chief Executive Officer Officer, Key employee | 40 | $116,269 | $3,488 |
| Denise Croden | President Trustee or director, Officer | 5 | $0 | $0 |
| Lisa Brown | Vice President Trustee or director, Officer | 5 | $0 | $0 |
| Heidi Grabenstatter | Secretary Trustee or director, Officer | 5 | $0 | $0 |
| Chris Jauch | Treasurer Trustee or director, Officer | 5 | $0 | $0 |
| Catherine Valcourt-Pearce | Director Trustee or director | 5 | $0 | $0 |
| Mike Fraunces | Director Trustee or director | 5 | $0 | $0 |
| Eden Rivera | Director Trustee or director | 5 | $0 | $0 |
| Alycia Halladay | Director Trustee or director | 5 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 8 SORRENTO DR, OSPREY, FL 34229-9610
- Principal officer (990 for 2025)
- Priscilla Hackstadt, 8 Sorrento Drive, Osprey, FL 34229
- Signed the 990
- Priscilla Hackstadt, Chief Financial Officer
- Phone
- (941) 485-8000
- Website
- pmsf.org
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.
Program accomplishments
- 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.Expenses $192,052
- 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.Expenses $168,860
- 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.Expenses $348,155 · grants $100,000 · revenue $14,143
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 04-3673104
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2003
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H80)
- Assets (IRS master file)
- $2,220,653
- Income (IRS master file)
- $1,245,861
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $1,245,861 | $1,082,374 | $2,220,653 | XML |
| 990 | December 2024 | $1,306,884 | $1,437,564 | $2,109,869 | XML |
| 990 | December 2023 | $1,062,761 | $1,098,819 | $2,243,009 | XML |
| 990 | December 2022 | $853,648 | $715,263 | $2,113,920 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 04-3673104).
Questions about PHELAN MCDERMID SYNDROME FOUNDATION
- What is the EIN of PHELAN MCDERMID SYNDROME FOUNDATION?
- The employer identification number (EIN) of PHELAN MCDERMID SYNDROME FOUNDATION is 04-3673104.
- Is PHELAN MCDERMID SYNDROME FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2003.
- Are donations to PHELAN MCDERMID SYNDROME FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does PHELAN MCDERMID SYNDROME FOUNDATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of PHELAN MCDERMID SYNDROME FOUNDATION due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did PHELAN MCDERMID SYNDROME FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of PHELAN MCDERMID SYNDROME FOUNDATION?
- The 990 for the year ended December 31, 2025 names Priscilla Hackstadt.
- Who are the officers and directors of PHELAN MCDERMID SYNDROME FOUNDATION?
- The 990 for the year ended December 31, 2025 lists 14 people; 5 received compensation from the organization, the highest $117,089 (Diane Linnehan, Chief Operating Officer/Co-interim CEO).
- How much revenue does PHELAN MCDERMID SYNDROME FOUNDATION have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $1,245,861, expenses of $1,082,374 and total assets of $2,220,653 at year end.
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