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Health : Diseases, Disorders, and Disciplines

Tuberous Sclerosis Alliance

Finding a cure for tuberous sclerosis while improving lives of those affected

87.24

801 Roeder Road Suite 750
Silver Spring, MD 20910
tel: (800) 225-6872   Web Site
EIN: 95-3018799

Board Leadership
David Fitzmaurice
Chair

CEO
Kari Luther Rosbeck
President & CEO

  Score
(out of 100)
Rating
Overall Score & Rating 87.24
  Financial 81.96
  Accountability & Transparency 100.00
This rating was published 11/01/2016 and includes data from FY2015, the most recent 990 received at that time.

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

Financial

81.96

Accountability & Transparency

100.00

This rating was published 11/01/2016 and includes data from FY2015, 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)
74.2%
  Administrative Expenses 9.1%
  Fundraising Expenses 16.5%
  Fundraising Efficiency $0.20
  Working Capital Ratio (years) 1.84
  Program Expenses Growth 3.1%
  Liabilities to Assets 3.2%
All data for Financial Performance Metrics calculations was provided by Tuberous Sclerosis Alliance on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Tuberous Sclerosis Alliance on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Tuberous Sclerosis Alliance (MD) 87.24
Huntington's Disease Society of America (NY) 91.37
Cystic Fibrosis Research, Inc. (CA) 93.84
Histiocytosis Association (NJ) 89.55
Massachusetts Down Syndrome Congress (MA) 91.45

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The Tuberous Sclerosis Alliance (TS Alliance) was founded in 1974 by four mothers coming together to provide fellowship, generate awareness, pursue more knowledge and provide hope to those who share the common bond of facing the daily challenges of tuberous sclerosis complex (TSC). During its more than 40 years of existence and growth, the TS Alliance has expanded its mission to improve the quality of life for individuals and families affected by TSC through the stimulation and sponsorship of research, the development of programs, support services and resource information, and the development and implementation of public and professional education programs designed to heighten awareness of TSC. TSC is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.

REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,802,730
   Federated Campaigns $46,963
   Membership Dues $28,136
   Fundraising Events $1,435,044
   Related Organizations $202,000
   Government Grants $0
Total Contributions $3,514,873
   Program Service Revenue $478,813
Total Primary Revenue $3,993,686
   Other Revenue $14,750
TOTAL REVENUE $4,008,436
   
EXPENSES (Adjusted)  
   Program Expenses $2,799,164
   Administrative Expenses $476,723
   Fundraising Expenses $634,703
TOTAL FUNCTIONAL EXPENSES $3,910,590
   
Payments to Affiliates $0
Excess (or Deficit) for the year $97,846
   
Net Assets $8,420,611

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 $1,706,806 60.0%
Family Services $608,533 21.4%
Public Health Education $364,102 12.8%
Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2015-12 11/01/2016 87.24
2014-12 06/01/2016 90.86
 
CN 2.0
2014-12 11/01/2015 90.89
2013-12 12/22/2014 91.17
2012-12 10/01/2013 89.50
2011-12 12/01/2012 87.19
2010-06 09/01/2012 80.80
2010-06 09/20/2011 82.84
 
CN 1.0
2009-06 11/24/2010 84.19
2008-06 10/01/2009 76.99
2007-06 10/01/2008 74.87
2006-06 03/01/2007 74.71
2005-06 04/01/2006 76.85
2004-06 04/01/2005 92.28

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

EIN 95-3018799
Name in IRS Master File NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
NTEE Code G03
NTEE Classification Professional Societies, Associations
NTEE Type Diseases, Disorders, Medical Disciplines
Classification Educational Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (161) Scientific research (diseases)
(149) Other instruction and training
(994) Described in section 170(b)1)(a)(vi) of the Code
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 October, 1975
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, 2015
  • December, 2014
  • December, 2013
  • December, 2012
  • December, 2011

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).

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Compensation % of Expenses Paid to Title Compensation from Affiliates
$164,915 4.21% Kari Luther Rosbeck President, CEO $3,366
Other Salaries of Note
$182,854 4.67% Steven L. Roberds Chief Scientific Officer --

The Tuberous Sclerosis Alliance (TS Alliance) was founded in 1974 by four mothers coming together to provide fellowship, generate awareness, pursue more knowledge and provide hope to those who share the common bond of facing the daily challenges of tuberous sclerosis complex (TSC). During its more than 40 years of existence and growth, the TS Alliance has expanded its mission to improve the quality of life for individuals and families affected by TSC through the stimulation and sponsorship of research, the development of programs, support services and resource information, and the development and implementation of public and professional education programs designed to heighten awareness of TSC. TSC is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.

Highly Rated

Charity Name & State Overall Score Overall Rating
Tuberous Sclerosis Alliance (MD) 87.24
Hemophilia Federation of America (DC) 92.92
Endometriosis Association (WI) 85.17
Jeffrey Modell Foundation (NY) 94.82
Organization for Autism Research (VA) 95.95

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Tuberous Sclerosis Alliance
801 Roeder Road
Suite 750
Silver Spring, MD 20910
tel: (800) 225-6872
fax: (301) 562-9870
EIN: 95-3018799

Mail donations to:
P.O. Box 10426
Uniondale, NY 11555

Visit Web Site

Board Leadership

David Fitzmaurice
Chair

CEO

Kari Luther Rosbeck
President & CEO

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