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National Down Syndrome Society

EIN 13-2992567 · New York, NY

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood85 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

The National Down Syndrome Society empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions.

Income
$4.7 million
Spending
$5.7 million
Spent on programs
80%
Reserves
19.5 months of spending
Largest source of income
donations and private grants, 68%
Employees
37
Volunteers
498
Highest pay
$239,048, president & ceo

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 85 out of 100.

  • Reserves

    35 of 35

    Spendable reserves would cover 19.5 months of spending.

  • Debt

    20 of 20

    It owes 7% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 22% of income.

  • Income trend

    15 of 15

    Income rose 17% on the year before.

  • Spending floor

    15 of 15

    80% of spending went to programs and raising each dollar of donations cost 23 cents.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100.

  • Independent board

    25 of 25

    24 of 24 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (5)
  1. $2.2 million spent. THE DOWN SYNDROME COMMUNITY IS THE HEART OF NDSS. OUR COMMUNITY ENGAGEMENT EVENTS AND ACTIVITIES CELEBRATE OUR LOVED ONES WITH DOWN SYNDROME, RAISE AWARENESS AND ACCEPTANCE AMONG THE GENERAL PUBLIC AND CONNECT INDIVIDUALS AND FAMILIES WITHIN THE COMMUNITY. THROUGH OUR SCHOLARSHIPS, GRANTS AND AWARDS PROGRAM, NDSS SUPPORTS INDIVIDUALS WITH DOWN SYNDROME IN PURSUING THEIR DREAMS. STARTED IN 1995, THE NATIONAL BUDDY WALK PROGRAM PROMOTES ACCEPTANCE AND INCLUSION OF PEOPLE WITH DOWN SYNDROME AND RAISES FUNDS FOR LOCAL AND NATIONAL ORGANIZATIONS THAT SUPPORT THE COMMUNITY. ADDITIONALLY, NDSS HOSTS AWARENESS AND ENGAGEMENT EVENTS THROUGHOUT THE COUNTRY INCLUDING OUR TIMES SQUARE VIDEO PRESENTATION AND NEW YORK CITY BUDDY WALK, RACING FOR 3.21 ON WORLD DOWN SYNDROME DAY, RUN FOR 3.21, DC GOLF OUTING, ANNUAL NDSS GALA & AUCTION AND MORE.
  2. $1.3 million spent. THE NDSS ADVOCACY & PUBLIC POLICY PROGRAM CHAMPIONS FEDERAL, STATE AND LOCAL POLICIES THAT POSITIVELY IMPACT ALL PEOPLE WITH DOWN SYNDROME ACROSS THE COUNTRY. THROUGH OUR GRASSROOTS ADVOCACY PROGRAMS, NDSS WORKS WITH CONGRESS AND FEDERAL AGENCIES, AS WELL AS STATE AND LOCAL OFFICIALS, TO DEVELOP AND IMPROVE LAWS, REGULATIONS AND POLICIES FOR THE BENEFIT OF THE DOWN SYNDROME COMMUNITY. NDSS ALSO EMPOWERS SELF-ADVOCATES, PARENTS AND OTHERS TO INFLUENCE POLICY THEMSELVES. THE NDSS LEGISLATIVE AGENDA SPANS THE LIFE EXPERIENCE OF INDIVIDUALS WITH DOWN SYNDROME FROM BIRTH TO ADULTHOOD, CENTERED ON FIVE IMPORTANT AREAS: HEALTHCARE AND RESEARCH, EDUCATION, ECONOMIC SELF-SUFFICIENCY, COMMUNITY INTEGRATION AND EMPLOYMENT.
  3. $1.1 million spent. NDSS IS COMMITTED TO PROVIDING INDIVIDUALS WITH DOWN SYNDROME, THEIR FAMILIES, CAREGIVERS AND THE PUBLIC WITH COMPREHENSIVE INFORMATION ACROSS THE LIFESPAN, FROM BIRTH TO END OF LIFE. THROUGH EVENTS, WEBINARS, VIDEOS, PUBLICATIONS AND OUR WEBSITE, NDSS PROVIDES FREE RESOURCES ON A VARIETY OF TOPICS INCLUDING INFORMATION FOR NEW AND EXPECTANT PARENTS, HEALTH AND WELLNESS, EDUCATION AND EMPLOYMENT. THROUGH OUR HELPLINE AND INFO EMAIL, NDSS ANSWERS THOUSANDS OF REQUESTS FOR SUPPORT EACH YEAR. OUR STAFF RESPONDS TO QUESTIONS AND CONNECTS PARENTS, PROFESSIONALS, SELF-ADVOCATES AND OTHERS WITH REFERRALS, INCLUDING TO OUR NETWORK OF MORE THAN 300 LOCAL DOWN SYNDROME ORGANIZATIONS.
  4. NATIONAL BUDDY WALK
  5. Since 1995, the National Buddy Walk Program has been the premier Down syndrome awareness, advocacy and peer-to-peer fundraising program in the world. It was created by the National Down Syndrome Society NDSS to promote acceptance and inclusion of people with Down syndrome and to raise funds for local and national incentives to support the Down syndrome community. Today, more than 100 Buddy Walk events take place in cities across the country and in select international locations.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending June 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since August 1979.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

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