Form 990 for tax year 2023
Filed by PHELAN MCDERMID SYNDROME FOUNDATION.
Totals
- Total revenue
- $1,062,761
- Total expenses
- $1,098,819
- Contributions and grants received
- $834,914
- Grants paid
- $222,500
- Program service revenue
- $110,073
- Investment income
- $14,095
- Other revenue
- $103,679
- Total assets, end of year
- $2,243,009
- Total liabilities, end of year
- $216,181
- Net assets or fund balances, end of year
- $2,026,828
- Program services expenses (Part IX)
- $807,593
- Management and general expenses
- $165,096
- Fundraising expenses
- $126,130
- Program service expenses (Part III)
- $807,593
Program services were 73.5% 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
$30,060
-
1d · Related organizations
$0
-
1e · Government grants (contributions)
$4,590
-
1f · All other contributions, gifts and grants
$800,264
-
1g · Noncash contributions included above
$0
-
2a · Program service revenue: Travel program reimbursement fees
total $110,073 · related or exempt $110,073 · 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 $14,095 · related or exempt $14,095 · 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
$108,183
-
8a · Fundraising events: contributions included on line 1c
$30,060
-
8b · Fundraising events: direct expenses
$4,504
-
8c · Net income from fundraising events
total $103,679 · unrelated business $0 · excluded $103,679
-
11e · Other revenue, total
$0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $220,000 · program services $220,000
-
3 · Grants to foreign organizations and individuals
total $2,500 · program services $2,500
-
5 · Compensation of officers, directors and key employees
total $116,600 · program services $69,960 · management and general $34,980 · fundraising $11,660
-
7 · Other salaries and wages
total $355,419 · program services $223,284 · management and general $65,902 · fundraising $66,233
-
8 · Pension plan contributions
total $11,153 · program services $6,617 · management and general $3,041 · fundraising $1,495
-
9 · Other employee benefits
total $734 · management and general $734
-
10 · Payroll taxes
total $37,884 · program services $24,154 · management and general $7,753 · fundraising $5,977
-
11g · Fees: other
total $86,803 · program services $66,001 · management and general $12,335 · fundraising $8,467
-
12 · Advertising and promotion
total $5,597 · program services $1,321 · fundraising $4,276
-
13 · Office expenses
total $29,679 · program services $3,717 · management and general $8,082 · fundraising $17,880
-
14 · Information technology
total $50,608 · program services $34,387 · management and general $6,914 · fundraising $9,307
-
16 · Occupancy
total $7,500 · management and general $7,500
-
17 · Travel
total $159,919 · program services $150,613 · management and general $9,013 · fundraising $293
-
19 · Conferences, conventions and meetings
total $6,336 · program services $4,539 · management and general $1,615 · fundraising $182
-
23 · Insurance
total $6,585 · program services $0 · management and general $6,585
-
24e · All other expenses
total $1,502 · program services $500 · management and general $642 · fundraising $360
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $1,550,551 · end of year $1,610,427
-
3 · Pledges and grants receivable
end of year $5,520
-
9 · Prepaid expenses and deferred charges
beginning of year $3,937 · end of year $59,184
-
10a · Land, buildings and equipment: cost or other basis
$13,017
-
10b · Land, buildings and equipment: accumulated depreciation
$13,017
-
10c · Land, buildings and equipment, net
beginning of year $0 · end of year $0
-
11 · Investments: publicly traded securities
beginning of year $559,432 · end of year $567,878
-
17 · Accounts payable and accrued expenses
beginning of year $48,845 · end of year $60,620
-
18 · Grants payable
end of year $155,000
-
19 · Deferred revenue
beginning of year $10,635 · end of year $561
-
27 · Net assets without donor restrictions
beginning of year $2,054,440 · end of year $2,025,504
-
28 · Net assets with donor restrictions
beginning of year $0 · end of year $1,324
Mission and programs · 2023
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.
-
RESEARCH SUPPORT: The Phelan-McDermid Syndrome Foundation (PMSF) works closely with researchers, pharmacological companies, biotechnology, academic institutions, and other external scientists with the ultimate goal of finding effective treatments for Phelan-McDermid syndrome (PMS). The PMSF contributes to research by breaking down barriers to patient participation. The PMSF provides information about and access to research opportunities as well as offers financial assistance for travel costs to certain research sites. The PMSF also works with its international scientific advisory committee (SAC) to set strategic goals in research and science for the PMSF and to stay informed of international PMS projects and research.
Expenses $575,637 · Grants $220,000 · Revenue $110,073
-
FAMILY SUPPORT: The Phelan-McDermid Syndrome Foundation (PMSF) is the largest patient advocacy group (PAG) for Phelan-McDermid syndrome in the world. The PMSF was established to provide critical information and support to empower families affected by this rare condition. The PMSF and its entire community of families, researchers, clinicians, and friends share everything they know about Phelan-McDermid syndrome and provide connections to a global community. The PMSF has created a worldwide virtual and local community and receives daily contact from families, extended families, clinicians, and researchers through email, social media, phone, and other avenues. Every two years, families, researchers, clinicians, and others who support people with Phelan-McDermid syndrome come together at the International Family Conference to laugh, share and learn. In non-conference years, the PMSF strives to create a virtual or in-person regional conference. The PMSF Regional REPs coordinate periodic in-person gatherings to help families create connections, share stories and support each other.
Expenses $231,956 · Grants $2,500
As filed on the 2023 return.
Listed in Part VII
-
Rhonda Blumenthal
Chief Executive Officer
- Total calculated
- $119,757
- From this org
- $116,269
- From related orgs
- $0
- Other
- $3,488
- Hours/week
- 40
-
Denise Croden
President
- Total calculated
- $0
- Hours/week
- 5
-
Lisa Brown
Vice President
- Total calculated
- $0
- Hours/week
- 5
-
Heidi Grabenstatter
Secretary
- Total calculated
- $0
- Hours/week
- 5
-
Chris Jauch
Treasurer
- Total calculated
- $0
- Hours/week
- 5
-
Catherine Valcourt-Pearce
Director
- Total calculated
- $0
- Hours/week
- 5
-
Mike Fraunces
Director
- Total calculated
- $0
- Hours/week
- 5
-
Eden Rivera
Director
- Total calculated
- $0
- Hours/week
- 5
-
Alycia Halladay
Director
- Total calculated
- $0
- Hours/week
- 5
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
-
To understand whether people with Phelan-McDermid syndrome, particularly those with severe neuropsychiatric illness (SNPI) -- have underlying differences in their immune system that might guide treatment.
-
$55,000
To study the response of cells from individuals with Phelan-McDermid syndrome to candidate therapeutics/treatments (such as Insulin-like Growth Factor 1 and human growth hormone) and identify subgroups in the Phelan-McDermid syndrome population that will potentially respond better or worse to the selected compounds.
-
$55,000
To develop an alternative objective measure of Gastrointestinal motility (GI transit) in individuals with Phelan-McDermid syndrome. Muffins with blue dye will be ingested by individuals with Phelan-McDermid syndrome and caregivers will use a mobile app to track and report GI transit time.
-
$10,000
To model neuroinflammation and neuropsychiatric regression in profound autism.
Provenance
- Return type
- form_990
- Tax year
- 2023
- Filed
- 1 March 2024
- IRS schema version
- 2023v4.0
- Source object
- 202440619349300914
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