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Health : Diseases, Disorders, and Disciplines

Tuberous Sclerosis Alliance

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

three stars

88.50

8737 Colesville Road, Suite 400
Silver Spring, MD 20910
tel: (800) 225-6872   Web Site
EIN: 95-3018799

Board Leadership
Peter Crino, MD, PhD
Chair

CEO
Kari Rosbeck
President, CEO

  Score
(out of 100)
Rating
Overall Score & Rating 88.50 three stars
  Financial 83.74 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 03/01/2021 and includes data from FY2019, 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

three stars

83.74

Accountability & Transparency

four stars

100.00

This rating was published 03/01/2021 and includes data from FY2019, 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)
75.1%
  Administrative Expenses 9.1%
  Fundraising Expenses 15.6%
  Fundraising Efficiency $0.19
  Working Capital Ratio (years) 1.58
  Program Expenses Growth 3.1%
  Liabilities to Assets 5.7%
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.

Constituent Feedback

Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people/communities they serve, may be more effective. We've partnered with GuideStar by Candid to survey organizations about their feedback practices. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile.

Here's how this organization is listening and learning from the people they serve:
How is the organization collecting feedback?
Electronic surveys (by email, tablet, etc), Focus groups or interviews (by phone or in person), Community meetings or town halls, Constituent (client or resident, etc) advisory committees
How is the organization using feedback?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve
With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our funders, Our community partners, Openly on our website
What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Describe a recent change in your organization that resulted from feedback.
We have included more digital platforms to accommodate how our community likes to receive information We changed our volunteer leadership summit by allowing our community leadership to design the agenda, provide peer training and help plan roundtable discussions We add a new goal to our strategic plan on improving access and quality care based on hearing form our community that there was inconsistent quality among TSC Clinics across the US
This Constituent Feedback information is provided to us by Candid. At this time, Constituent Feedback information published on this organization's page has no effect on its star rating per our methodology.

Highly Rated

Charity Name & State Overall Score Overall Rating
Tuberous Sclerosis Alliance (MD) 88.50 three stars
Bryan's House (TX) 88.63 three stars
Southwest Autism Research & Resource Center (AZ) 90.50 four stars
Children and Adults with Attention-Deficit/Hyperactivity Disorder (MD) 88.45 three stars
NEXT for AUTISM (NY) 96.38 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $2,890,096
   Federated Campaigns $35,476
   Membership Dues $4,329
   Fundraising Events $2,417,642
   Related Organizations $180,000
   Government Grants $0
Total Contributions $5,527,543
   Program Service Revenue $461,658
Total Primary Revenue $5,989,201
   Other Revenue $727,033
TOTAL REVENUE $6,716,234
   
EXPENSES (Adjusted)  
   Program Expenses $4,055,684
   Administrative Expenses $522,270
   Fundraising Expenses $1,061,381
TOTAL FUNCTIONAL EXPENSES $5,639,335
   
Payments to Affiliates $0
Excess (or Deficit) for the year $1,076,899
   
Net Assets $9,756,587

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 $2,469,373 60.3%
Support Services $744,912 18.2%
Public Health Education $438,744 10.7%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-12 03/01/2021 88.50 three stars
2018-12 09/03/2019 92.95 four stars
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, 2018
  • December, 2017
  • December, 2016
  • December, 2015
  • December, 2014
Compensation % of Expenses Paid to Title Compensation from Affiliates
$195,071 3.45% Kari L. Rosbeck President, CEO $3,612
Other Salaries of Note
$209,520 3.71% Steven L. Roberds Chief Scientific Officer --

Highly Rated

Charity Name & State Overall Score Overall Rating
Tuberous Sclerosis Alliance (MD) 88.50 three stars
National Brain Tumor Society (MA) 94.08 four stars
Autism Society of America (MD) 86.32 three stars
Tourette Association of America (NY) 85.23 three stars
Organization for Autism Research (VA) 95.71 four stars

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This charity has an official representative registered with Charity Navigator.

Constituent Feedback

This organization is sharing information on how they communicate with stakeholders to better inform your giving.

Charity Contact Info

Tuberous Sclerosis Alliance
8737 Colesville Road, Suite 400

Silver Spring, MD 20910
tel: (800) 225-6872
fax: (301) 562-9870
EIN: 95-3018799

Mail donations to:
8737 Colesville Road, Suite 400
Silver Spring, MD 20910

Visit Web Site

Board Leadership

Peter Crino, MD, PhD
Chair

CEO

Kari Rosbeck
President, CEO

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