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

93.40

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

Board Leadership
Beth Dean
Chair

CEO
Kari Luther Rosbeck
President & CEO

  Score
(out of 100)
Rating
Overall Score & Rating 93.40 four stars
  Financial 90.67 four stars
  Accountability & Transparency 100.00 four stars
This rating was published 10/01/2018 and includes data from FY2017, 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 45 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 45 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

four stars

90.67

Accountability & Transparency

four stars

100.00

This rating was published 10/01/2018 and includes data from FY2017, 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)
74.6%
  Administrative Expenses 10.5%
  Fundraising Expenses 14.8%
  Fundraising Efficiency $0.17
  Working Capital Ratio (years) 1.73
  Program Expenses Growth 7.6%
  Liabilities to Assets 7.1%
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) 93.40 four stars
International OCD Foundation (MA) 85.84 three stars
Huntington's Disease Society of America (NY) 91.04 four stars
The Marfan Foundation (NY) 91.83 four stars
The Association for Frontotemporal Degeneration (PA) 96.35 four stars

Compare These Charities (Highly Rated)

REVENUE  
Contributions  
   Contributions, Gifts & Grants $2,116,949
   Federated Campaigns $37,803
   Membership Dues $47,932
   Fundraising Events $1,344,269
   Related Organizations $403,000
   Government Grants $0
Total Contributions $3,949,953
   Program Service Revenue $824,241
Total Primary Revenue $4,774,194
   Other Revenue $-31,390
TOTAL REVENUE $4,742,804
   
EXPENSES (Adjusted)  
   Program Expenses $4,038,862
   Administrative Expenses $509,121
   Fundraising Expenses $773,314
TOTAL FUNCTIONAL EXPENSES $5,321,297
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-578,493
   
Net Assets $9,056,780

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 $2,752,226 67.5%
Support Services $773,653 19.0%
Public Health Education $322,284 7.9%

Ratings History
Tuberous Sclerosis Alliance has received 2 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2017-12 10/01/2018 93.40 four stars
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, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013

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
$192,244 3.61% Kari L. Rosbeck President, CEO
Other Salaries of Note
$201,086 3.77% Steven L. Roberds Chief Scientific Officer

Highly Rated

Charity Name & State Overall Score Overall Rating
Tuberous Sclerosis Alliance (MD) 93.40 four stars
Histiocytosis Association (NJ) 89.69 three stars
Epilepsy Foundation of Texas (TX) 90.58 four stars
Scleroderma Foundation (MA) 96.52 four stars
Immune Deficiency Foundation (MD) 95.25 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:
801 Roeder Road, Suite 750
Silver Spring, MD 20910

Visit Web Site

Board Leadership

Beth Dean
Chair

CEO

Kari Luther Rosbeck
President & CEO

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.