Disable all preview features

Health : Diseases, Disorders, and Disciplines

Tuberous Sclerosis Alliance

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

four stars

90.71

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

Board Leadership
Timothy Dills
Chair

CEO
Kari Luther Rosbeck
President & CEO

  Score
(out of 100)
Rating
Overall Score & Rating 90.71 four stars
  Financial 86.87 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 11/01/2017 and includes data from FY2016, the most recent 990 received at that time.

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.

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.

Financial

three stars

86.87

Accountability & Transparency

four stars

100.00

This rating was published 11/01/2017 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)
74.4%
  Administrative Expenses 9.8%
  Fundraising Expenses 15.6%
  Fundraising Efficiency $0.18
  Working Capital Ratio (years) 1.92
  Program Expenses Growth 6.4%
  Liabilities to Assets 7.3%
All data for Financial Performance Metrics calculations was provided by Tuberous Sclerosis Alliance on recent 990s filed with the IRS.
Joint Cost Allocation Adjustment applied. Learn more.
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) 90.71 four stars
First Candle (MD) 85.31 three stars
Solve ME/CFS Initiative (CA) 85.42 three stars
Beyond Celiac (PA) 91.74 four stars
Cystic Fibrosis Research, Inc. (CA) 94.05 four stars

Compare These Charities (Highly Rated)

REVENUE  
Contributions  
   Contributions, Gifts & Grants $3,187,207
   Federated Campaigns $36,891
   Membership Dues $9,045
   Fundraising Events $1,284,683
   Related Organizations $0
   Government Grants $0
Total Contributions $4,517,826
   Program Service Revenue $629,254
Total Primary Revenue $5,147,080
   Other Revenue $60,479
TOTAL REVENUE $5,207,559
   
EXPENSES (Adjusted)  
   Program Expenses $3,703,239
   Administrative Expenses $501,237
   Fundraising Expenses $687,961
TOTAL FUNCTIONAL EXPENSES $4,892,437
   
Payments to Affiliates $0
Excess (or Deficit) for the year $315,122
   
Net Assets $9,266,204

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 $2,469,977 65.8%
Family Services $780,145 20.8%
Public Health Education $293,296 7.8%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2016-12 11/01/2017 90.71 four stars
2015-12 11/01/2016 87.24 three stars
2014-12 06/01/2016 90.86 four stars
 
CN 2.0
2014-12 11/01/2015 90.89 four stars
2013-12 12/22/2014 91.17 four stars
2012-12 10/01/2013 89.50 three stars
2011-12 12/01/2012 87.19 three stars
2010-06 09/01/2012 80.80 three stars
2010-06 09/20/2011 82.84 three stars
 
CN 1.0
2009-06 11/24/2010 84.19 three stars
2008-06 10/01/2009 76.99 two stars
2007-06 10/01/2008 74.87 two stars
2006-06 03/01/2007 74.71 two stars
2005-06 04/01/2006 76.85 two stars
2004-06 04/01/2005 92.28 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 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).

We invite you to share your opinions, thoughts, experiences, and stories about this charity here to help inform the decisions of other donors.  
Need more help getting started? Check out our FAQs.
 
This tool is not for questions about Charity Navigator, such as how we derived this charity’s rating. We will happily answer those questions if you contact us directly. Likewise, if you have questions for this charity, then we encourage you to contact the charity directly (we include the charity’s contact information in the upper left-hand corner of this page) since few charities regularly monitor this commenting tool.

Compensation % of Expenses Paid to Title
$170,716 3.48% Kari Luther Rosbeck President, CEO
Other Salaries of Note
$184,985 3.78% Steven L. Roberds Chief Scientific Officer

Highly Rated

Charity Name & State Overall Score Overall Rating
Tuberous Sclerosis Alliance (MD) 90.71 four stars
Glaucoma Research Foundation (CA) 91.98 four stars
Jeffrey Modell Foundation (NY) 98.23 four stars
Solve ME/CFS Initiative (CA) 85.42 three stars
Cystic Fibrosis Research, Inc. (CA) 94.05 four stars

Compare These Charities (Highly Rated)

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

Timothy Dills
Chair

CEO

Kari Luther Rosbeck
President & CEO

[ X ]

Did You Know We Are a Charity, Too?

If even a third of the 7 million people who visited our site last year had donated a dollar to Charity Navigator, we would comfortably meet our annual budget and be able to do what so many of you ask us to do every day--rate more charities!

With the support of users like you, we are currently investing in staff and technology. This will allow us to improve the search and organizational features of our site, making it easier to find the information that matters most to you. We will also continue to enhance our evaluation system and metrics.

So, whether you're a first time visitor or a long time user, we ask for your help in achieving our goal. Your gift of any size is most deeply appreciated! Thank You!

With the support of users like you, we are making it easier to find the info that matters most. Thank you!

Join Our Mailing List

Join over 400,000 other informed givers and get updates on charity ratings, new features, hot topics, and tips for donating.

Help Center