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Health : Diseases, Disorders, and Disciplines

The Cornelia de Lange Syndrome Foundation

Reaching out, providing help, giving hope

four stars

100.00

302 West Main Street Suite 100
Avon, CT 06001
tel: (800) 676-8166   Web Site
EIN: 06-1057497

Board Leadership
Patrick Lyons
Board Chair

CEO
Bonnie Royster
Executive Director

 
 
  Score
(out of 100)
Rating
Overall Score & Rating 100.00 four stars
  Financial 100.00 four stars
  Accountability & Transparency 100.00 four stars
This rating was published 05/01/2018 and includes data from FY2016, the most recent 990 received at that time.

Founded in 1981, The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization which exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime. The Foundation provides a host of services that attract, educate, and unite families touched by this rare birth disorder which causes individuals to develop at a slower rate, both physically and mentally. CdLS is a congenital syndrome, and individuals affected have common characteristics such as: low birth weight, slow growth and small stature, small head size, and limb differences.

Founded in 1981, The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization which exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime. The Foundation provides a host of services that attract, educate, and unite families touched by this rare birth disorder which causes individuals to develop at a slower rate, both physically and mentally. CdLS is a congenital syndrome, and individuals affected have common characteristics such as: low birth weight, slow growth and small stature, small head size, and limb differences.

Financial

four stars

100.00

Accountability & Transparency

four stars

100.00

This rating was published 05/01/2018 and includes data from FY2016, 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)
87.9%
  Administrative Expenses 5.5%
  Fundraising Expenses 6.5%
  Fundraising Efficiency $0.06
  Working Capital Ratio (years) 1.31
  Program Expenses Growth 10.5%
  Liabilities to Assets 2.1%
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) 100.00 four stars
Cerebral Palsy (WI) 88.50 three stars
Alpha-1 Foundation (FL) 97.13 four stars
Fanconi Anemia Research Fund (OR) 94.74 four stars
Cerebral Palsy Foundation (NY) 91.52 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $584,139
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $255,767
   Related Organizations $0
   Government Grants $0
Total Contributions $839,906
   Program Service Revenue $0
Total Primary Revenue $839,906
   Other Revenue $89,522
TOTAL REVENUE $929,428
   
EXPENSES  
   Program Expenses $911,615
   Administrative Expenses $59,318
   Fundraising Expenses $59,615
TOTAL FUNCTIONAL EXPENSES $1,030,548
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-101,120
   
Net Assets $1,206,868

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 $445,412 48.9%
Professional Education Outreach & Awareness $212,398 23.3%
Public Information & Education $200,636 22.0%

Ratings History
The Cornelia de Lange Syndrome Foundation has received 7 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
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, 2016
  • December, 2015
  • December, 2014
  • December, 2013
  • December, 2012

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

Compensation % of Expenses Paid to Title
$31,875 3.09% Susan Pribyson Executive Director
Other Salaries of Note
$83,843 8.13% Kelly Brown Interim Executive Director

Highly Rated

Charity Name & State Overall Score Overall Rating
The Cornelia de Lange Syndrome Foundation (CT) 100.00 four stars
Cerebral Palsy (WI) 88.50 three stars
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) (NY) 93.82 four stars
Alpha-1 Foundation (FL) 97.13 four stars
Prader-Willi Syndrome Association (USA) (FL) 85.60 three stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

The Cornelia de Lange Syndrome Foundation
302 West Main Street
Suite 100
Avon, CT 06001
tel: (800) 676-8166
fax: (860) 676-8337
EIN: 06-1057497

Visit Web Site

Board Leadership

Patrick Lyons
Board Chair

CEO

Bonnie Royster
Executive Director

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