National Down Syndrome Congress

Nonprofit profile at a glance

EIN
510163631
IRS 990 coverage
2010–2025
Forms available
Form 990 2025
Location
Cincinnati, OH, USA
Phone
7706049500
Rating
73
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Health

Official website

Reported finances

Revenue
$2,091,467
Expenses
$1,874,625
Assets
$744,605
Liabilities
$173,695

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

17 people listed

Executive titles in this filing

  • SEAN SMITH (PRESIDENT)
  • ANTHONY ZANFORDINO (1ST VICE PRESIDENT)
  • BEAU BROOKS (2ND VICE PRESIDENT)
  • NICOLE BAUMER (3RD VICE PRESIDENT)
  • ZACHARY CARROLL (4TH VICE PRESIDENT)
  • KISHORE VELLODY (PAST PRESIDENT)

Highest reported compensation

  • JAMES HUDSON (EXECUTIVE DIRECTOR): $193,886 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The mission of the national down syndrome congress is to provide information, advocacy, and support concerning all aspects of life for individuals with down syndrome.ndsc exists with the purpose to promote the interests of people with down syndrome, to educate through awareness, to advocate and ensure their rights are recognized and protected, to empower, and to inspire and reshape the way people understand and experience down syndrome.the vision of the ndsc is a world with equal rights and opportunities for people with down syndrome.

What it reported doing in 2025

Ndsc resource center - the center serves as a national resource for parents, professionals, and others seeking information about down syndrome. These resources are accessible via a toll-free phone number, the ndsc website, and through a robust social media presence that provides education, information, and referrals to interested parties. To enhance efforts in providing relevant and current information, ndsc also has an active government policy and advocacy team. This team informs individuals connected to the ndsc community about current legislative initiatives related to down syndrome and other relevant topics. Additionally, ndsc produces monthly electronic newsletters and periodic free webinars in english and spanish. Housed within the national down syndrome congress center, the ndsc center for outreach and education provides one-day seminars and conferences for parents, siblings and educators in various locations across the country.

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
Distribution model
Direct operator. The filing allocates 97% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and total assets are small relative to annual expenses; liquid coverage is unknown.

Rating breakdown

  • Financial Efficiency: 66
  • Transparency & Controls: 72
  • Accountability: 95
  • Sustainability: 37
  • Growth: 80

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 70.5%; rating input score 70
  • Program expense ratio: 78.1%; rating input score 78
  • Fundraising efficiency: $3.51 raised per $1 spent on fundraising; rating input score 9; 9th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.8%; rating input score 94; 21st percentile among comparable filings
  • Pay-setting controls: 1 of 6 controls in place; rating input score 17
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Pass
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 94.2%; rating input score 94; 34th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 7 of 8 controls in place; rating input score 88
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 10.4%; rating input score 56; 56th percentile among comparable filings
  • Total-asset coverage ratio: 0.4; rating input score 12; 12th percentile among comparable filings
  • Liabilities to assets ratio: 0.23; rating input score 32; 32nd percentile among comparable filings
  • Officer compensation ratio: 10.3%; rating input score 32; 32nd percentile among comparable filings

Growth

  • Program expense growth: 4.8% per year; rating input score 100; 35th percentile among comparable filings
  • Revenue growth: 4.8% per year; rating input score 100; 36th percentile among comparable filings
  • Asset growth: -1.4% per year; rating input score 0; 7th percentile among comparable filings

Details

  • Where the money goes: 70.5% of revenue deployed · 78.1% of spending went to programs
  • Governance: 16 of 16 board members independent · 7 of 8 filing controls reported
  • Programs: 3 filed program accomplishments · $1.5M in reported program spending
  • Leadership: top reported pay $194K · 17 people listed · 1 of 6 pay-setting controls reported
  • Highest-paid contractors: 1 contractor listed · $190K reported
  • Consistency: 36 of 37 current checks pass · 1 finding to review
  • Schedules: 9 filed schedules · includes major donors, grants, and executive pay
  • Filing history: 15 filing years from 2010 to 2025
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • Related organizations: 4 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Financial Efficiency: Fundraising efficiency scored 9/100.
  • High — Sustainability: Total-asset coverage ratio scored 12/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • Review — Sustainability: Operating margin scored 56/100.
  • High — Growth: Asset growth scored 0/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 32/100.
  • Moderate — Sustainability: Officer compensation ratio scored 32/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.