Form 990 for tax year 2025
Filed by PHELAN MCDERMID SYNDROME FOUNDATION.
Totals
- Total revenue
- $1,245,861
- Total expenses
- $1,082,374
- Contributions and grants received
- $1,060,585
- Grants paid
- $105,000
- Program service revenue
- $14,143
- Investment income
- $96,976
- Other revenue
- $74,157
- Total assets, end of year
- $2,220,653
- Total liabilities, end of year
- $154,468
- Net assets or fund balances, end of year
- $2,066,185
- Program services expenses (Part IX)
- $709,067
- Management and general expenses
- $174,572
- Fundraising expenses
- $198,735
- Program service expenses (Part III)
- $709,067
Program services were 65.5% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Line items
Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.
Revenue
Part VIII, the statement of revenue.
-
1a · Federated campaigns
$0
-
1b · Membership dues
$0
-
1c · Fundraising events
$29,882
-
1d · Related organizations
$0
-
1e · Government grants (contributions)
$110,632
-
1f · All other contributions, gifts and grants
$920,071
-
1g · Noncash contributions included above
$0
-
2a · Program service revenue: Travel reimbursement program
total $14,143 · related or exempt $14,143 · unrelated business $0 · excluded $0
-
2f · All other program service revenue
total $0 · related or exempt $0 · unrelated business $0 · excluded $0
-
3 · Investment income
total $96,976 · related or exempt $96,976 · unrelated business $0 · excluded $0
-
4 · Income from investment of tax-exempt bond proceeds
total $0 · related or exempt $0 · unrelated business $0 · excluded $0
-
5 · Royalties
total $0 · related or exempt $0 · unrelated business $0 · excluded $0
-
6c · Rental income or loss
real property $0 · personal property $0
-
7c · Gain or loss
securities $0 · other assets $0
-
8a · Fundraising events: gross income
$73,622
-
8a · Fundraising events: contributions included on line 1c
$29,882
-
8b · Fundraising events: direct expenses
$0
-
8c · Net income from fundraising events
total $73,622 · unrelated business $0 · excluded $73,622
-
11d · All other revenue
total $535 · related or exempt $535 · unrelated business $0 · excluded $0
-
11e · Other revenue, total
$535
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $100,000 · program services $100,000
-
2 · Grants to domestic individuals
total $0 · program services $0
-
3 · Grants to foreign organizations and individuals
total $5,000 · program services $5,000
-
4 · Benefits paid to or for members
total $0 · program services $0
-
5 · Compensation of officers, directors and key employees
total $351,129 · program services $236,613 · management and general $67,007 · fundraising $47,509
-
6 · Compensation of disqualified persons
total $0 · program services $0 · management and general $0 · fundraising $0
-
7 · Other salaries and wages
total $199,809 · program services $146,120 · management and general $31,930 · fundraising $21,759
-
8 · Pension plan contributions
total $12,884 · program services $8,166 · management and general $2,988 · fundraising $1,730
-
9 · Other employee benefits
total $542 · program services $0 · management and general $542 · fundraising $0
-
10 · Payroll taxes
total $43,833 · program services $29,407 · management and general $8,994 · fundraising $5,432
-
11a · Fees: management
total $0 · program services $0 · management and general $0 · fundraising $0
-
11b · Fees: legal
total $0 · program services $0 · management and general $0 · fundraising $0
-
11c · Fees: accounting
total $0 · program services $0 · management and general $0 · fundraising $0
-
11d · Fees: lobbying
total $0 · program services $0 · management and general $0 · fundraising $0
-
11e · Fees: professional fundraising services
total $0 · fundraising $0
-
11f · Fees: investment management
total $0 · program services $0 · management and general $0 · fundraising $0
-
11g · Fees: other
total $213,985 · program services $112,150 · management and general $23,831 · fundraising $78,004
-
12 · Advertising and promotion
total $7,618 · program services $641 · management and general $0 · fundraising $6,977
-
13 · Office expenses
total $32,076 · program services $3,237 · management and general $7,996 · fundraising $20,843
-
14 · Information technology
total $42,934 · program services $21,883 · management and general $15,617 · fundraising $5,434
-
15 · Royalties
total $0 · program services $0 · management and general $0 · fundraising $0
-
16 · Occupancy
total $8,100 · program services $0 · management and general $8,100 · fundraising $0
-
17 · Travel
total $40,204 · program services $40,204 · management and general $0 · fundraising $0
-
18 · Travel or entertainment for public officials
total $0 · program services $0 · management and general $0 · fundraising $0
-
19 · Conferences, conventions and meetings
total $4,379 · program services $4,299 · management and general $0 · fundraising $80
-
20 · Interest
total $0 · program services $0 · management and general $0 · fundraising $0
-
21 · Payments to affiliates
total $0 · program services $0 · management and general $0 · fundraising $0
-
22 · Depreciation, depletion and amortization
total $0 · program services $0 · management and general $0 · fundraising $0
-
23 · Insurance
total $7,769 · program services $202 · management and general $7,567 · fundraising $0
-
24e · All other expenses
total $12,112 · program services $1,145 · fundraising $10,967
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $1,452,626 · end of year $212,923
-
2 · Savings and temporary cash investments
end of year $1,548,970
-
3 · Pledges and grants receivable
beginning of year $73,450 · end of year $14,250
-
9 · Prepaid expenses and deferred charges
beginning of year $12,720 · end of year $43,366
-
10c · Land, buildings and equipment, net
beginning of year $0
-
11 · Investments: publicly traded securities
beginning of year $571,073 · end of year $401,144
-
17 · Accounts payable and accrued expenses
beginning of year $19,270 · end of year $37,256
-
18 · Grants payable
beginning of year $190,696 · end of year $100,000
-
19 · Deferred revenue
beginning of year $561 · end of year $17,212
-
27 · Net assets without donor restrictions
beginning of year $1,894,920 · end of year $2,062,385
-
28 · Net assets with donor restrictions
beginning of year $4,422 · end of year $3,800
Mission and programs · 2025
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.
-
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
-
Withheld by Nonprofiteer: this text may name a private individual.
Expenses $348,155 · Grants $100,000 · Revenue $14,143
As filed on the 2025 return. A text marked withheld matched a screen for wording that may name a private individual, such as an honorific or "in memory of". Most of what it withholds names no one; it is withheld so that what does is never shown.
Listed in Part VII
-
Diane Linnehan
Chief Operating Officer/Co-interim CEO
- Total calculated
- $120,416
- From this org
- $117,089
- From related orgs
- $0
- Other
- $3,327
- Hours/week
- 40
-
Lauren Schmitt
Chief Science Officer
- Total calculated
- $111,366
- From this org
- $108,138
- From related orgs
- $0
- Other
- $3,228
- Hours/week
- 40
-
Shira Johnson
Chief Development Officer/Co-Interim CEO
- Total calculated
- $56,013
- From this org
- $54,382
- From related orgs
- $0
- Other
- $1,631
- Hours/week
- 40
-
Priscilla Hackstadt
Chief Financial Officer
- Total calculated
- $49,424
- From this org
- $48,022
- From related orgs
- $0
- Other
- $1,402
- Hours/week
- 16
-
Rhonda Blumenthal
Chief Executive Officer
- Total calculated
- $31,359
- From this org
- $30,446
- From related orgs
- $0
- Other
- $913
- Hours/week
- 40
-
Denise Croden
President
- Total calculated
- $0
- Hours/week
- 5
-
Ben Holocher
Vice President
- Total calculated
- $0
- Hours/week
- 5
-
Lisa Brown
Secretary
- Total calculated
- $0
- Hours/week
- 5
-
Michael Cento
Treasurer
- Total calculated
- $0
- Hours/week
- 5
-
Catherine Valcourt-Pearce
Director
- Total calculated
- $0
- Hours/week
- 2
-
Rebecca Buchanan
Director
- Total calculated
- $0
- Hours/week
- 2
-
Eden Rivera
Director
- Total calculated
- $0
- Hours/week
- 2
-
Dr Lori Levi
Director
- Total calculated
- $0
- Hours/week
- 2
-
Heidi Grabenstatter PhD
Director
- Total calculated
- $0
- Hours/week
- 2
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those.
Grants on this return
-
Children's Hospital of Los Angeles
$100,000
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.
Provenance
- Return type
- form_990
- Tax year
- 2025
- Filed
- 6 March 2026
- IRS schema version
- 2025v4.0
- Source object
- 202630699349300018
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