National Down Syndrome Congress
Public records show a registered, tax-exempt organization in good standing.
What it says it does
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.
- Income
- $2.1 million
- Spending
- $1.9 million
- Spent on programs
- 78%
- Reserves
- 1.2 months of spending
- Largest source of income
- donations and private grants, 44%
- Employees
- 11
- Volunteers
- 795
- Highest pay
- $193,886, executive director
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Good: 71 out of 100. Higher than 34% of charities in its peer group (diseases, $1m to $10m).
Reserves
10 of 35Spendable reserves would cover 1.2 months of spending.
Debt
16 of 20It owes 23% of what it owns.
Living within its means
15 of 15Income exceeded spending by 10% of income.
Income trend
15 of 15Income rose 21% on the year before.
Spending floor
15 of 1578% of spending went to programs and raising each dollar of donations cost 28 cents.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 94 out of 100. Higher than 52% of charities in its peer group (diseases, $1m to $10m).
Independent board
25 of 2516 of 16 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
9 of 15Its accounts were reviewed or compiled by an independent accountant, but not audited.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 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 (3)
- $1.0 million spent. 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.
- $413,585 spent. ANNUAL CONVENTION - THE CONGRESS HOLDS A CONVENTION EACH YEAR AT A DIFFERENT LOCATION IN THE UNITED STATES TO EDUCATE PARENTS, PROFESSIONALS, AND SELF-ADVOCATES WITH DOWN SYNDROME ON CURRENT TOPICS.
- $35,581 spent. DSAIA - THE DSAIA PROGRAM BUILDS A COMMUNITY OF LIKE-MINDED LOCAL LEADERS OF DOWN SYNDROME ORGANIZATIONS BY SHARING BEST PRACTICES, RESOURCES, AND TOOLS TO HELP THEM BETTER RUN THEIR ORGANIZATIONS AT THE LOCAL LEVEL.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
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.
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.
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.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since October 1975.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
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.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.