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NATIONAL DOWN SYNDROME SOCIETY

EIN 13-2992567 NEW YORK, NY

Revenue 2024
$4,702,778
Expenses 2024
$5,721,193

Program services were 80.3% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
Classification
1000
Street
8 E 41ST STREET 8TH FLOOR

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • KANDI PICKARD

    President & CEO

    Total calculated
    $239,048
    From this org
    $197,048
    From related orgs
    $0
    Other
    $42,000
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $197,048
    Bonus
    not reported
    Other
    not reported
    Deferred
    $358
    Nontaxable benefits
    $41,642
    Filer's total
    $239,048

  • Robert Snow

    Disability Adv

    Total calculated
    $145,001
    From this org
    $97,251
    From related orgs
    $0
    Other
    $47,750
    Hours/week
    40

  • Carlo P Frappolli

    Chairman

    Total calculated
    $0
    Hours/week
    2

  • Thomas Warner

    Vice President

    Total calculated
    $0
    Hours/week
    1.5

  • Janet Eissenstat

    Secretary

    Total calculated
    $0
    Hours/week
    1.5

  • John Short

    Treasurer

    Total calculated
    $0
    Hours/week
    1.5

  • Elizabeth F Goodwin

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Kerry Sette

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • John Cronin

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Misty Holmes

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Marjorie Shavers

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Mark Johnson

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Debbie Morris

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Lisa Pelham

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Thomas Santos

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Schunda Murphy

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Robert Siegel

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Candace Whiting

    Director

    Total calculated
    $0
    Hours/week
    1.5

  • Lauren Wang

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • C Mitch Taylor

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Michael Kulma

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Victoria Tremonti

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Joe Joyce

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Courtney Gaines

    Director

    Total calculated
    $0
    Hours/week
    0.7

  • Ciara Siegel

    Director

    Total calculated
    $0
    Hours/week
    0.7

The first 25 listed. 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. Earlier years are each on their own filing page.

Filings

  • 2024
    Revenue
    $4,702,778
    Expenses
    $5,721,193
    Contributions
    $3,173,086
    Grants paid
    $172,025
  • 2023
    Revenue
    $4,012,682
    Expenses
    $5,273,290
    Contributions
    $2,381,511
    Grants paid
    $304,638
  • 2022
    Revenue
    $3,354,289
    Expenses
    $4,160,847
    Contributions
    $2,046,293
    Grants paid
    $41,234

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2024 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2023 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.

Grants made

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

California fundraising campaigns

Campaigns run by paid fundraisers, commercial coventurers and thrift stores naming this organization, as California published them. Both figures are as filed, and what the first one counts depends on the campaign type — a coventurer or a thrift store files its own sales rather than money collected for the charity. The 990 reports this only as a yearly total, never per campaign.

  • CREATIVE GENIUS LLC

    $39,115 in sales

    2020 Commercial Coventurer

    $1,956 to charity

Amounts are as filed and do not add up: a commercial coventurer reports one promotion's whole gross once for each charity that shared in it. A campaign may also name more than one registered charity, in which case it appears on each.

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 10 September 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The IRS Business Master File ingested 5 October 2026, which is when the registration facts above were last refreshed for every organization. Returns through tax year 2024, the newest we have parsed for this organization.