Nonprofit · EIN 51-0163631
NATIONAL DOWN SYNDROME CONGRESS
Also known as DOWN SYNDROME CONGRESS NATIONAL
Tax-exempt · CINCINNATI, OH 45209
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $2,091,467 | $1,874,625 | $216,842 | $744,605 | $173,695 | $570,910 |
| December 31, 2024 | 990 | $1,734,848 | $1,653,010 | $81,838 | $495,809 | $141,741 | $354,068 |
| December 31, 2023 | 990 | $1,931,676 | $1,934,348 | -$2,672 | $438,794 | $166,564 | $272,230 |
| December 31, 2022 | 990 (amended) | $1,401,237 | $1,586,655 | -$185,418 | $420,223 | $144,625 | $275,598 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $982,801
- of which government grants
- $72,536
- Program service revenue
- $903,422
- Investment income
- $30,980
- Net income from fundraising events
- $174,264
- Other revenue
- $174,264
Expenses
- Grants and similar amounts paid
- $42,800
- Compensation of officers, directors and key employees
- $157,243
- Other salaries and wages
- $390,113
- Salaries, compensation and benefits (total)
- $643,760
- Professional fundraising fees
- $65,033
- Legal fees
- $2,513
- Accounting fees
- $12,663
- Occupancy
- $7,735
- Travel
- $86,308
- Depreciation
- $851
- Program services (functional)
- $1,464,407
- Management and general (functional)
- $130,171
- Fundraising (functional)
- $280,047
Balance sheet and other
- Total assets, start of year
- $495,809
- Total assets, end of year
- $744,605
- Total liabilities, end of year
- $173,695
- Net assets, end of year
- $570,910
- Land, buildings and equipment
- $4,319
- Net assets without donor restrictions
- $194,381
- Net assets with donor restrictions
- $376,529
- Gross receipts
- $2,174,732
- Employees
- 11
- Volunteers
- 795
- Year formed
- 1974
- State of legal domicile
- IL
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| JAMES HUDSON | EXECUTIVE DIRECTOR Officer | 40 | $157,243 | $36,643 |
| SEAN SMITH | PRESIDENT Trustee or director, Officer | 10 | $0 | $0 |
| ANTHONY ZANFORDINO | 1ST VICE PRESIDENT Trustee or director, Officer | 4 | $0 | $0 |
| BEAU BROOKS | 2ND VICE PRESIDENT Trustee or director, Officer | 6 | $0 | $0 |
| NICOLE BAUMER | 3RD VICE PRESIDENT Trustee or director, Officer | 1 | $0 | $0 |
| ZACHARY CARROLL | 4TH VICE PRESIDENT Trustee or director, Officer | 1 | $0 | $0 |
| ANDRE PINEDA | TREASURER Trustee or director, Officer | 6 | $0 | $0 |
| DAVID CHAPLIN | SECRETARY Trustee or director, Officer | 2 | $0 | $0 |
| KISHORE VELLODY | PAST PRESIDENT Trustee or director, Officer | 4 | $0 | $0 |
| BRADLEY CARLISLE | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| ANNA EBENSEN | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| BETH FORAKER | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| HANNAH LACOUR | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| CANDICE MOFFIT | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| JEFF SCOTT | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
2 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| NOEMI SPINAZZI | DIRECTOR Trustee or director | 0.5 | $0 |
| CLAIR WALLACE | DIRECTOR Trustee or director | 0.5 | $0 |
990 for the year ended December 31, 2024: 17 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| STEPHANIE SMITH LEE | POLICY/ADVOCACY CO-DIRECTOR Highest-paid employee | 40 | $112,280 | $0 |
| JAMES HUDSON | EXECUTIVE DIRECTOR Officer | 40 | $86,973 | $7,787 |
| SEAN SMITH | PRESIDENT Trustee or director, Officer | 10 | $0 | $0 |
| ANTHONY ZANFORDINO | 1ST VICE PRESIDENT Trustee or director, Officer | 4 | $0 | $0 |
| BEAU BROOKS | 2ND VICE PRESIDENT Trustee or director, Officer | 6 | $0 | $0 |
| ZACHARY CARROLL | 3RD VICE PRESIDENT Trustee or director, Officer | 1 | $0 | $0 |
| NICOLE BAUMER | 4TH VICE PRESIDENT Trustee or director, Officer | 1 | $0 | $0 |
| MARILYN TOLBERT | PAST PRESIDENT Trustee or director, Officer | 4 | $0 | $0 |
| ANDRE PINEDA | TREASURER Trustee or director, Officer | 6 | $0 | $0 |
| DAVID CHAPLIN | SECRETARY Trustee or director, Officer | 2 | $0 | $0 |
| CRAIG BLACKBURN | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| BRADLEY CARLISLE | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| BETH FORAKER | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| HANNAH LACOUR | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| MACARENA LIZAMA MD | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| NOEMI SPINAZZI | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| CLAIR WALLACE | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
990 for the year ended December 31, 2023: 18 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| JORDAN KOUGH | EXECUTIVE DIRECTOR Officer | 40 | $130,808 | $3,518 |
| SEAN SMITH | PRESIDENT Trustee or director, Officer | 10 | $0 | $0 |
| ANTHONY ZANFORDINO | 1ST VICE PRESIDENT Trustee or director, Officer | 4 | $0 | $0 |
| BEAU BROOKS | 2ND VICE PRESIDENT Trustee or director, Officer | 6 | $0 | $0 |
| DANA HALLE ESQ | 3RD VICE PRESIDENT Trustee or director, Officer | 1 | $0 | $0 |
| MARILYN TOLBERT | PAST PRESIDENT Trustee or director, Officer | 4 | $0 | $0 |
| ANDRE PINEDA | TREASURER Trustee or director, Officer | 6 | $0 | $0 |
| DAVID CHAPLIN | SECRETARY Trustee or director, Officer | 2 | $0 | $0 |
| NICOLE BAUMER | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| CRAIG BLACKBURN | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| BRADLEY CARLISLE | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| ZACHARY CARROLL | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| DANIEL CHAPLIN | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| ANDREA HOLMES | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| MACARENA LIZAMA MD | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| MITCHEL ROTHHOLZ RPH | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| NOEMI SPINAZZI | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
| JENNY STONE | DIRECTOR Trustee or director | 0.5 | $0 | $0 |
990 for the year ended December 31, 2022: 21 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| JORDAN KOUGH | EXECUTIVE DIRECTOR Officer | 40 | $186,346 |
| SHAUNTEL NEAL-HOWE | PRESIDENT Trustee or director, Officer | 8 | $0 |
| KATE DOUGHERTY | 1ST VICE PRESIDENT Trustee or director, Officer | 3 | $0 |
| VALERIE WILLIAMS | 2ND VICE PRESIDENT Trustee or director, Officer | 2 | $0 |
| MITCHEL ROTHHOLZ | 3RD VICE PRESIDENT Trustee or director, Officer | 1 | $0 |
| DANA HALLE | 4TH VICE PRESIDENT Trustee or director, Officer | 3 | $0 |
| ZACHARY CARROLL | TREASURER Trustee or director, Officer | 1 | $0 |
| MEGAN SMULSKI | SECRETARY Trustee or director, Officer | 2 | $0 |
| KISHORE VELLODY | IMMEDIATE PAST PRESIDENT Trustee or director | 2 | $0 |
| NICOLE BAUMER | DIRECTOR Trustee or director | 1 | $0 |
| BRUCE BENNETT | DIRECTOR Trustee or director | 1 | $0 |
| DANIEL CHAPLIN | DIRECTOR Trustee or director | 1 | $0 |
| JOHN DICKERSON | DIRECTOR Trustee or director | 1.5 | $0 |
| MAGGIE ERICKSON KILGANNON | DIRECTOR Trustee or director | 1 | $0 |
| BARB HELM | DIRCTOR Trustee or director | 1 | $0 |
| ANDREA HOLMES | DIRECTOR Trustee or director | 1.3 | $0 |
| MACARENA LIZAMA | DIRECTOR Trustee or director | 2 | $0 |
| LORI MCKEE | DIRECTOR Trustee or director | 1 | $0 |
| LORA OLSON | DIRECTOR Trustee or director | 1 | $0 |
| SEAN SMITH | DIRECTOR Trustee or director | 1 | $0 |
| JENNY STONE | DIRECTOR Trustee or director | 2 | $0 |
Address and contacts
- Address (IRS master file)
- ATTN FUELED COLLECTIVE 3825 EDWARDS, CINCINNATI, OH 45209-1287
- In care of
- % N-A
- Principal officer (990 for 2025)
- ANDRE PINEDA, 3825 EDWARDS RD STE 103, CINCINNATI, OH 452091262
- Signed the 990
- ANDRE PINEDA, TREASURER
- Phone
- (770) 604-9500
- Website
- WWW.NDSCCENTER.ORG
- Return prepared by
- CRI ADVISORS LLC
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.
Program accomplishments
- 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.Expenses $1,015,241 · grants $42,800 · revenue $893,485
- 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.Expenses $413,585
- 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.Expenses $35,581 · revenue $9,937
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 51-0163631
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (509(a)(2))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1975
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G25Z)
- Assets (IRS master file)
- $744,605
- Income (IRS master file)
- $2,174,732
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $2,091,467 | $1,874,625 | $744,605 | IRS |
| 990 | December 2024 | $1,734,848 | $1,653,010 | $495,809 | XML |
| 990 | December 2023 | $1,931,676 | $1,934,348 | $438,794 | XML |
| 990 | December 2022 | $1,401,237 | $1,586,655 | $420,223 | XML |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 51-0163631).
Questions about NATIONAL DOWN SYNDROME CONGRESS
- What is the EIN of NATIONAL DOWN SYNDROME CONGRESS?
- The employer identification number (EIN) of NATIONAL DOWN SYNDROME CONGRESS is 51-0163631.
- Is NATIONAL DOWN SYNDROME CONGRESS tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1975.
- Are donations to NATIONAL DOWN SYNDROME CONGRESS tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does NATIONAL DOWN SYNDROME CONGRESS file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of NATIONAL DOWN SYNDROME CONGRESS due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did NATIONAL DOWN SYNDROME CONGRESS last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of NATIONAL DOWN SYNDROME CONGRESS?
- The 990 for the year ended December 31, 2025 names ANDRE PINEDA.
- Who are the officers and directors of NATIONAL DOWN SYNDROME CONGRESS?
- The 990 for the year ended December 31, 2025 lists 17 people; 1 received compensation from the organization, the highest $157,243 (JAMES HUDSON, EXECUTIVE DIRECTOR).
- How much revenue does NATIONAL DOWN SYNDROME CONGRESS have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $2,091,467, expenses of $1,874,625 and total assets of $744,605 at year end.
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