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Health : Diseases, Disorders, and Disciplines

The Cornelia de Lange Syndrome Foundation

Reaching Out, Providing Help, and Giving Hope.

four stars

95.33

30 Tower Lane Suite 400
Avon, CT 06001
tel: (800) 676-8166   Web Site
EIN: 06-1057497

Board Leadership
Mike Christie
President

CEO
Bonnie Royster
Executive Director

  Score
(out of 100)
Rating
Overall Score & Rating 95.33 four stars
  Financial 94.76 four stars
  Accountability & Transparency 96.00 four stars
This rating was published 07/01/2021 and includes data from FY2019, the most recent 990 received at that time.

Founded in 1981, The Cornelia de Lange Syndrome (CdLS) Foundation' mission is reflected in its slogan: Reaching Out, Providing Help, and Giving Hope. We have served individuals with CdLS and their families since 1981. We distribute a number of publications to families and professionals caring for individuals with CdLS, as well as host meetings and conferences where researchers and families can meet to exchange information. We also act as a facilitator between families and professionals, utilizing a team of professionals who lend their expertise to those caring for an individual with CdLS.

Founded in 1981, The Cornelia de Lange Syndrome (CdLS) Foundation' mission is reflected in its slogan: Reaching Out, Providing Help, and Giving Hope. We have served individuals with CdLS and their families since 1981. We distribute a number of publications to families and professionals caring for individuals with CdLS, as well as host meetings and conferences where researchers and families can meet to exchange information. We also act as a facilitator between families and professionals, utilizing a team of professionals who lend their expertise to those caring for an individual with CdLS.

Financial

four stars

94.76

Accountability & Transparency

four stars

96.00

This rating was published 07/01/2021 and includes data from FY2019, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
83.0%
  Administrative Expenses 8.6%
  Fundraising Expenses 8.3%
  Fundraising Efficiency $0.06
  Working Capital Ratio (years) 2.35
  Program Expenses Growth 4.3%
  Liabilities to Assets 0.7%
All data for Financial Performance Metrics calculations was provided by The Cornelia de Lange Syndrome Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by The Cornelia de Lange Syndrome Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
The Cornelia de Lange Syndrome Foundation (CT) 95.33 four stars
The Progeria Research Foundation (MA) 92.06 four stars
United Ability (AL) 96.15 four stars
National Fragile X Foundation (VA) 86.92 three stars
Fanconi Anemia Research Fund (OR) 94.94 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,904,591
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $284,385
   Related Organizations $0
   Government Grants $0
Total Contributions $2,188,976
   Program Service Revenue $0
Total Primary Revenue $2,188,976
   Other Revenue $100,172
TOTAL REVENUE $2,289,148
   
EXPENSES  
   Program Expenses $776,923
   Administrative Expenses $89,717
   Fundraising Expenses $88,144
TOTAL FUNCTIONAL EXPENSES $954,784
   
Payments to Affiliates $0
Excess (or Deficit) for the year $1,334,364
   
Net Assets $2,430,453

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
Family Support Programs $332,287 42.8%
Professional Education Outreach & Awareness $213,536 27.5%
Public Information & Education $204,834 26.4%

Ratings History
The Cornelia de Lange Syndrome Foundation has received 10 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-12 07/01/2021 95.33 four stars
2018-12 04/01/2020 96.66 four stars
2017-12 12/21/2018 92.38 four stars
2016-12 05/01/2018 100.00 four stars
2015-12 06/01/2017 92.92 four stars
2014-12 06/01/2016 98.69 four stars
 
CN 2.0
2014-12 12/22/2015 97.82 four stars
2013-12 04/01/2015 96.10 four stars
2012-12 11/01/2013 97.36 four stars
2011-12 12/01/2012 98.96 four stars
2010-12 12/01/2011 96.21 four stars
2009-12 09/20/2011 84.48 three stars
 
CN 1.0
2009-12 04/01/2011 78.66 two stars
2008-12 02/01/2010 89.68 three stars
2007-12 11/01/2008 85.99 three stars
2006-12 12/01/2007 96.58 four stars
2005-12 11/01/2006 96.09 four stars
2004-12 11/01/2005 91.02 four 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 06-1057497
Name in IRS Master File CORNELIA DE LANGE SYNDROME FOUNDATION INC
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 (125) Giving information or opinion (see also Advocacy)
Foundation Status Organization that normally receives no more than one-third of its support from gross investment income and unrelated business income and at the same time more than one-third of its support from contributions, fees, and gross receipts related to exempt purposes.  509(a)(2)
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 March, 1982
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • December, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$104,725 10.96% Morrisette Royster Executive Director

Highly Rated

Charity Name & State Overall Score Overall Rating
The Cornelia de Lange Syndrome Foundation (CT) 95.33 four stars
Fanconi Anemia Research Fund (OR) 94.94 four stars
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) (NY) 92.42 four stars
Cerebral Palsy Foundation (NY) 85.09 three stars
Alpha-1 Foundation (FL) 93.26 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

The Cornelia de Lange Syndrome Foundation
30 Tower Lane
Suite 400
Avon, CT 06001
tel: (800) 676-8166
fax: (860) 676-8337
EIN: 06-1057497

Visit Web Site

Board Leadership

Mike Christie
President

CEO

Bonnie Royster
Executive Director

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