Totals
- Total revenue
- $2,759,719
- Total expenses
- $3,286,372
- Contributions and grants received
- $2,705,416
- Grants paid
- $764,779
- Program service revenue
- $0
- Investment income
- $33,441
- Other revenue
- $20,862
- Total assets, end of year
- $209,267
- Total liabilities, end of year
- $61,809
- Net assets or fund balances, end of year
- $147,458
- Program services expenses (Part IX)
- $2,521,015
- Management and general expenses
- $347,263
- Fundraising expenses
- $418,094
- Program service expenses (Part III)
- $2,521,015
Program services were 76.7% 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.
-
1c · Fundraising events
$280,312
-
1f · All other contributions, gifts and grants
$2,425,104
-
3 · Investment income
total $33,441 · excluded $33,441
-
8a · Fundraising events: gross income
$121,091
-
8a · Fundraising events: contributions included on line 1c
$280,312
-
8b · Fundraising events: direct expenses
$100,229
-
8c · Net income from fundraising events
total $20,862 · excluded $20,862
Functional expenses
Part IX, the statement of functional expenses.
-
2 · Grants to domestic individuals
total $764,779 · program services $764,779
-
5 · Compensation of officers, directors and key employees
total $313,761 · program services $230,860 · management and general $20,826 · fundraising $62,075
-
7 · Other salaries and wages
total $1,024,348 · program services $753,698 · management and general $67,992 · fundraising $202,658
-
8 · Pension plan contributions
total $3,975 · program services $2,925 · management and general $264 · fundraising $786
-
9 · Other employee benefits
total $10,939 · program services $8,049 · management and general $726 · fundraising $2,164
-
10 · Payroll taxes
total $284,905 · program services $209,628 · management and general $18,911 · fundraising $56,366
-
11b · Fees: legal
total $24,123 · program services $1 · management and general $22,789 · fundraising $1,333
-
11c · Fees: accounting
total $107,343 · program services $6 · management and general $101,404 · fundraising $5,933
-
11g · Fees: other
total $42,807 · program services $11 · management and general $31,641 · fundraising $11,155
-
12 · Advertising and promotion
total $87,912 · program services $75,572 · fundraising $12,340
-
13 · Office expenses
total $16,614 · program services $15,176 · management and general $360 · fundraising $1,078
-
14 · Information technology
total $88,032 · program services $64,772 · management and general $5,844 · fundraising $17,416
-
16 · Occupancy
total $27,465 · program services $20,208 · management and general $1,823 · fundraising $5,434
-
17 · Travel
total $42,165 · program services $31,861 · fundraising $10,304
-
19 · Conferences, conventions and meetings
total $54,940 · program services $54,940
-
22 · Depreciation, depletion and amortization
total $140,272 · program services $103,210 · management and general $9,310 · fundraising $27,752
-
23 · Insurance
total $15,060 · management and general $15,060
-
24a · Other expenses: Sites expenses and rese
total $175,733 · program services $175,733
-
24b · Other expenses: Bad Debt
total $26,322 · management and general $26,322
-
24c · Other expenses: Taxes Fees & Licenses
total $23,081 · management and general $23,081
-
24d · Other expenses: Supplies
total $4,220 · program services $3,202 · management and general $256 · fundraising $762
-
24e · All other expenses
total $7,576 · program services $6,384 · management and general $654 · fundraising $538
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $116,453 · end of year $9,221
-
2 · Savings and temporary cash investments
beginning of year $463,920
-
3 · Pledges and grants receivable
beginning of year $74,385 · end of year $167,671
-
9 · Prepaid expenses and deferred charges
beginning of year $12,839 · end of year $12,380
-
10a · Land, buildings and equipment: cost or other basis
$648,483
-
10b · Land, buildings and equipment: accumulated depreciation
$632,088
-
10c · Land, buildings and equipment, net
beginning of year $156,668 · end of year $16,395
-
15 · Other assets
beginning of year $24,138 · end of year $3,600
-
17 · Accounts payable and accrued expenses
beginning of year $90,075 · end of year $6,374
-
19 · Deferred revenue
beginning of year $63,682 · end of year $55,435
-
25 · Other liabilities
beginning of year $20,535 · end of year $0
-
27 · Net assets without donor restrictions
beginning of year $585,748 · end of year $112,458
-
28 · Net assets with donor restrictions
beginning of year $88,363 · end of year $35,000
Mission and programs · 2024
Mission
TO ACCELERATE THE RESEARCH THAT WILL INCREASE THE AVAILABILITY OF THERAPEUTIC, DIAGNOSTIC AND MEDICAL CARE OPTIONS TO IMPROVE HEALTH AND INDEPENDENCE FOR PEOPLE WITH DOWN SYNDROME AND TO EMPOWER FAMILIES THROUGH EDUCATION, CONNECTIONS AND SUPPORT.
-
THE LIFE-DSR NATURAL HISTORY STUDY, RESEARCH CONSENSUS PROJECTS AND RESEARCH POLICY PROJECTS SUPPORT MEDICAL RESEARCH THAT WILL RESULT IN TREATMENT TO SIGNIFICANTLY IMPROVE HEALTH AND INDEPENDENCE IN PERSONS WITH DOWN SYNDROME. COMMUNITY PROGRAMS FOR TREATMENT ACCESS EQUITY, RESEARCH AWARENESS AND PARTICIPATION, AND FOR EMPOWERING FAMILIES WITH RESOURCES, MEDICAL INFORMATION, AND RESEARCH PARTICIPATION OPPORTUNITIES. INCLUDES COST RELATED TO IDSCS MY DOWN SYNDROME COMMUNITY PLATFORM (MYDSC).
Expenses $2,521,015 · Grants $764,779
As filed on the 2024 return.
Listed in Part VII
-
Anthony Providenti
Board Chair
- Total calculated
- $0
- Hours/week
- 1
-
Tony Hung
Board Vice Chair
- Total calculated
- $0
- Hours/week
- 1
-
Hector Guinness
Treasurer
- Total calculated
- $0
- Hours/week
- 1
-
Chris Senna
Secretary
- Total calculated
- $0
- Hours/week
- 1
-
Beverly Paperiello
Director
- Total calculated
- $0
- Hours/week
- 1
-
Claudia Moreira
Director
- Total calculated
- $0
- Hours/week
- 1
-
Das Narayandas
Director
- Total calculated
- $0
- Hours/week
- 1
-
Jeff Strobel
Director
- Total calculated
- $0
- Hours/week
- 1
-
Karen Gaffney
Director
- Total calculated
- $0
- Hours/week
- 1
-
Lasandra Brill
Director
- Total calculated
- $0
- Hours/week
- 1
-
Ludivine van der Heyden
Director
- Total calculated
- $0
- Hours/week
- 1
-
Hampus Hillerstrom
President and CEO
- Total calculated
- $313,761
- From this org
- $296,406
- From related orgs
- $0
- Other
- $17,355
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $296,406
- Bonus
- $0
- Other
- $0
- Deferred
- $9,300
- Nontaxable benefits
- $8,055
- Filer's total
- $313,761
-
Katherine O'Neill
VP Marketing & Community E
- Total calculated
- $111,312
- From this org
- $108,466
- From related orgs
- $0
- Other
- $2,846
- Hours/week
- 40
-
Lois Kelly
VP of Clinical Operations
- Total calculated
- $235,784
- From this org
- $235,746
- From related orgs
- $0
- Other
- $38
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $235,746
- Bonus
- $0
- Other
- $0
- Deferred
- $0
- Nontaxable benefits
- $38
- Filer's total
- $235,784
-
Michelle Petronio
Chief Development Officer
- Total calculated
- $184,098
- From this org
- $172,068
- From related orgs
- $0
- Other
- $12,030
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $172,068
- Bonus
- $0
- Other
- $0
- Deferred
- $3,975
- Nontaxable benefits
- $8,055
- Filer's total
- $184,098
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. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.
Schedule J
Answered yes
- 3 · Independent compensation consultant
- 3 · Written employment contract
- 3 · Compensation survey or study
- 3 · Approval by the board or compensation committee
Answered no
- 4a · Severance or change-of-control payment
- 4b · Supplemental nonqualified retirement plan
- 4c · Equity-based compensation arrangement
- 5a · Pay contingent on this organization's revenues
- 5b · Pay contingent on a related organization's revenues
- 6a · Pay contingent on this organization's net earnings
- 6b · Pay contingent on a related organization's net earnings
- 7 · Other non-fixed payments
- 8 · Paid under the initial-contract exception
The filer's explanations (Part III)
- Part I, Line 4
- Hampus note: No severance was given.
Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.
Grants on this return
No itemized grants to organizations on this return.
Provenance
- Return type
- form_990
- Tax year
- 2024
- Filed
- 16 March 2026
- IRS schema version
- 2024v5.5
- Source object
- 202620759349300132
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