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Health : Medical Research (Grantmaking)

Rett Syndrome Research Trust

Making Rett History

three stars

85.85

67 Under Cliff Road Trumbull, CT 06611
tel: (203) 445-0041   Web Site
EIN: 26-0687439

Board Leadership
Anthony Schoener
Chairman

CEO
Monica Coenraads
Executive Director

 
 
  Score
(out of 100)
Rating
Overall Score & Rating 85.85 three stars
  Financial 80.00 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 02/01/2018 and includes data from FY2016, the most recent 990 received at that time.

RSRT was launched in 2008 to drive research toward a cure for Rett Syndrome and related MECP2 disorders. Our mission is urgent: 15,000 girls and women in the US and 350,000 globally live with the agonizing symptoms of Rett Syndrome.

RSRT funds more research than any other Rett organization in the U.S. and abroad. Since 2008, RSRT has awarded $35 million to research. 96% of every dollar donated to RSRT goes directly to our research program.

As one of the few neurological disorders to show dramatic symptom reversal in mice, Rett Syndrome has attracted unprecedented interest from university and pharmaceutical scientists. Through innovative research and constant engagement with scientists, clinicians, industry, investors and affected families, RSRT is at the epicenter of this activity.
We believe Rett can be cured, but time matters. A rigorous, coordinated, and agile research agenda will get us there as quickly as possible. Our ultimate goal is to become obsolete - by finding a cure.

RSRT was launched in 2008 to drive research toward a cure for Rett Syndrome and related MECP2 disorders. Our mission is urgent: 15,000 girls and women in the US and 350,000 globally live with the agonizing symptoms of Rett Syndrome.

RSRT funds more research than any other Rett organization in the U.S. and abroad. Since 2008, RSRT has awarded $35 million to research. 96% of every dollar donated to RSRT goes directly to our research program.

As one of the few neurological disorders to show dramatic symptom reversal in mice, Rett Syndrome has attracted unprecedented interest from university and pharmaceutical scientists. Through innovative research and constant engagement with scientists, clinicians, industry, investors and affected families, RSRT is at the epicenter of this activity.
We believe Rett can be cured, but time matters. A rigorous, coordinated, and agile research agenda will get us there as quickly as possible. Our ultimate goal is to become obsolete - by finding a cure.

Financial

three stars

80.00

Accountability & Transparency

four stars

100.00

This rating was published 02/01/2018 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)
93.4%
  Administrative Expenses 1.5%
  Fundraising Expenses 5.0%
  Fundraising Efficiency $0.06
  Working Capital Ratio (years) < 0.01
  Program Expenses Growth 15.8%
  Liabilities to Assets 222.8%
All data for Financial Performance Metrics calculations was provided by Rett Syndrome Research Trust on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Rett Syndrome Research Trust on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Rett Syndrome Research Trust (CT) 85.85 three stars
The Hastings Center (NY) 89.53 three stars
American Foundation for Surgery of the Hand (IL) 90.87 four stars
The Focused Ultrasound Foundation (VA) 96.47 four stars
FRAXA Research Foundation (MA) 92.92 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $7,849,652
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $0
   Related Organizations $0
   Government Grants $0
Total Contributions $7,849,652
   Program Service Revenue $0
Total Primary Revenue $7,849,652
   Other Revenue $10,466
TOTAL REVENUE $7,860,118
   
EXPENSES  
   Program Expenses $7,960,963
   Administrative Expenses $156,465
   Fundraising Expenses $430,975
TOTAL FUNCTIONAL EXPENSES $8,548,403
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-688,285
   
Net Assets $-7,744,686

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
Research Funding $7,846,166 98.6%
Sponsor Scientific Workshops $114,797 1.4%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2016-12 02/01/2018 85.85 three stars
2015-12 02/01/2017 85.85 three stars
2014-12 06/01/2016 85.85 three stars
 
CN 2.0
2014-12 12/01/2015 91.52 four stars
2013-12 05/01/2015 92.16 four stars
2012-12 08/01/2014 91.17 four stars
2012-12 09/16/2013 87.11 three 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 26-0687439
Name in IRS Master File RETT SYNDROME RESEARCH TRUST INC
NTEE Code E12
NTEE Classification Fund Raising and/or Fund Distribution
NTEE Type Health - General and Rehabilitative
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities
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 February, 2008
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
$137,834 1.61% Monica Coenraads Executive Director
Other Salaries of Note
$250,000 2.92% Randall Carpenter Chief Scientific Officer
$200,000 2.33% Tim Freeman Chief Development Officer

Highly Rated

Charity Name & State Overall Score Overall Rating
Rett Syndrome Research Trust (CT) 85.85 three stars
NEXT for AUTISM (NY) 85.42 three stars
Foundation for Prader-Willi Research (CA) 91.29 four stars
Concern Foundation (CA) 85.61 three stars
Drugs for Neglected Diseases Initiative North America (NY) 85.56 three stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Rett Syndrome Research Trust
67 Under Cliff Road
Trumbull, CT 06611
tel: (203) 445-0041
fax: (203) 445-9234
EIN: 26-0687439

Visit Web Site

Board Leadership

Anthony Schoener
Chairman

CEO

Monica Coenraads
Executive Director

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