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Health : Diseases, Disorders, and Disciplines

National Down Syndrome Society

The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome

four stars

94.37

8 E 41st Street Eighth Floor
New York, NY 10017
tel: (800) 221-4602   Web Site
EIN: 13-2992567

Board Leadership
Gordon Spoor
Chair

CEO
Kandi Pickard
Interim President & CEO

 
 
  Score
(out of 100) 		Rating
Overall Score & Rating 94.37 four stars
  Financial 92.05 four stars
  Accountability & Transparency 100.00 four stars
This rating was published 07/01/2019 and includes data from FY2018, the most recent 990 received at that time.
Why isn't this based on more recent data?

The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. Founded in 1979, our activities include shaping and advocating for improved public policy, increased public resources and services for people with Down syndrome; working in partnership with our affiliates and other support organizations; improving educational opportunities for individuals with Down syndrome; advancing basic, clinical and applied research; and implementing a national public awareness strategy.

The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. Founded in 1979, our activities include shaping and advocating for improved public policy, increased public resources and services for people with Down syndrome; working in partnership with our affiliates and other support organizations; improving educational opportunities for individuals with Down syndrome; advancing basic, clinical and applied research; and implementing a national public awareness strategy.

Impact Information

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GuideStar is Charity Navigator's trusted partner in sharing information on how this organization seeks impact.  GuideStar has recognized this organization with a Platinum Seal of Transparency for voluntarily and publicly sharing information about how they measure their progress and results.  Learn More about Impact Information.
Reported Results
Total in 2018
Number of people on the organization's email list
50,286
This organization has earned a GuideStar's Platinum Seal of Transparency by voluntarily sharing the measures of progress and results they use to pursue their mission. Organizations earn Platinum Seals by selecting from a catalog of over 900 expert recognized metrics or by creating a new metric that best fits their work. This information is reported by the organization and displayed publicly on their GuideStar Nonprofit Profile. With over 1.6 million Nonprofit Profiles, 9 million annual visitors and over 200 data partners, GuideStar is the world's leading source of information about nonprofit organizations. A nonprofit itself, GuideStar is dedicated to providing better data for better decisions for a better world.
This impact information is current as of September 2019, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

Learn more about how we calculate the overall score and rating.

Financial

four stars

92.05

Accountability & Transparency

four stars

100.00

This rating was published 07/01/2019 and includes data from FY2018, the most recent 990 received at that time.
Why isn't this based on more recent data?
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)		 74.7%
  Administrative Expenses 11.3%
  Fundraising Expenses 13.8%
  Fundraising Efficiency $0.15
  Working Capital Ratio (years) 4.00
  Program Expenses Growth 17.5%
  Liabilities to Assets 3.0%
All data for Financial Performance Metrics calculations was provided by National Down Syndrome Society on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by National Down Syndrome Society on recent 990s filed with the IRS.
Information Provided on the Form 990  
  Independent Voting Board Members
  No Material diversion of assets
  Audited financials prepared by independent accountant
  Does Not Provide Loan(s) to or Receive Loan(s) From related parties
  Documents Board Meeting Minutes
  Provided copy of Form 990 to organization's governing body in advance of filing
  Conflict of Interest Policy
  Whistleblower Policy
  Records Retention and Destruction Policy
  CEO listed with salary
  Process for determining CEO compensation
  Board Listed / Board Members Not Compensated
Is the following information easily accessible on the charity's website?  
  Donor Privacy Policy
  Board Members Listed
  Audited Financials
  Form 990
  Key staff listed

Highly Rated

Charity Name & State Overall Score Overall Rating
National Down Syndrome Society (NY) 94.37 four stars
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) (NY) 93.82 four stars
Angelman Syndrome Foundation (IL) 90.55 four stars
National Fragile X Foundation (DC) 94.84 four stars
Cerebral Palsy (WI) 88.99 three stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $2,352,176
   Federated Campaigns $158,178
   Membership Dues $0
   Fundraising Events $0
   Related Organizations $0
   Government Grants $0
Total Contributions $2,510,354
   Program Service Revenue $35,911
Total Primary Revenue $2,546,265
   Other Revenue $716,822
TOTAL REVENUE $3,263,087
   
EXPENSES  
   Program Expenses $2,921,285
   Administrative Expenses $340,756
   Fundraising Expenses $617,688
TOTAL FUNCTIONAL EXPENSES $3,879,729
   
Payments to Affiliates $28,234
Excess (or Deficit) for the year $-616,642
   
Net Assets $11,884,620

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Community Support and Outreach $842,282 28.8%
Advocacy and Public Policy $401,618 13.7%
Inclusive Health and Sports $268,233 9.2%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2018-03 07/01/2019 94.37 four stars
2017-03 11/01/2018 87.28 three stars
2017-03 08/01/2018 86.97 three stars
2016-03 07/01/2017 87.13 three stars
2015-03 06/01/2016 90.98 four stars
 
CN 2.0
2014-03 10/01/2015 87.91 three stars
2013-03 06/01/2014 90.51 four stars
2012-03 06/01/2013 83.41 three stars
2011-03 03/01/2012 91.10 four stars
2010-03 09/20/2011 87.51 three stars
 
CN 1.0
2010-03 07/01/2011 78.87 two stars
2009-03 06/01/2010 82.20 three stars
2008-03 06/01/2009 79.79 two stars
2007-03 05/01/2008 87.60 three stars
2006-03 05/01/2007 87.55 three stars
2005-03 05/01/2006 90.78 four stars
2004-03 03/01/2005 88.45 three stars
2003-03 06/01/2004 85.75 three stars
2002-03 01/01/2004 79.50 two stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 13-2992567
Name in IRS Master File NATIONAL DOWN SYNDROME SOCIETY
NTEE Code [Not Provided by IRS]
NTEE Classification [Not Provided by IRS]
NTEE Type [Not Provided by IRS]
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (160) Aid to the handicapped (see also 031)
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date August, 1979
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End March
IRS Forms 990
(provided courtesy of Foundation Center)		 (Log In or Register Now to View Forms 990!)
  • March, 2018
  • March, 2017
  • March, 2016
  • March, 2015
  • March, 2014
Compensation % of Expenses Paid to Title
$256,046 6.59% Sara Weir President

Highly Rated

Charity Name & State Overall Score Overall Rating
National Down Syndrome Society (NY) 94.37 four stars
The Progeria Research Foundation (MA) 92.09 four stars
Fanconi Anemia Research Fund (OR) 93.21 four stars
The Cornelia de Lange Syndrome Foundation (CT) 92.38 four stars
United Ability (AL) 95.29 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

National Down Syndrome Society
8 E 41st Street
Eighth Floor
New York, NY 10017
tel: (800) 221-4602
EIN: 13-2992567

Visit Web Site

Board Leadership

Gordon Spoor
Chair

CEO

Kandi Pickard
Interim President & CEO

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