Health : Diseases, Disorders, and Disciplines

Tuberous Sclerosis Alliance

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

impact data icon

Impact Information is available from our partner, GuideStar

four stars

92.95

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 92.95 four stars
  Financial 90.04 four stars
  Accountability & Transparency 100.00 four stars
This rating was published 09/03/2019 and includes data from FY2018, 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.

Impact Information

GuideStar is Charity Navigator's trusted partner in sharing information on how this organization seeks impact.  GuideStar has recognized this organization with a Platinum Seal of Transparency for voluntarily and publicly sharing information about how they measure their progress and results.  Learn More about Impact Information.
Reported Results
Showing 3 of 5
Total in 2018
Number of funding dollars secured for demonstration projects or pilots
2,457,380
Number of overall donors
352
Number of new clients within the past 12 months
1,169
Number of one-on-one coaching sessions
24,928
Estimated number of funding dollars secured for the sector
1,519,240
This impact information is current as of September 2019, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

Financial

four stars

90.04

Accountability & Transparency

four stars

100.00

This rating was published 09/03/2019 and includes data from FY2018, 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)
76.4%
  Administrative Expenses 9.4%
  Fundraising Expenses 14.0%
  Fundraising Efficiency $0.18
  Working Capital Ratio (years) 0.93
  Program Expenses Growth 17.7%
  Liabilities to Assets 6.4%
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.
REVENUE  
Contributions  
   Contributions, Gifts & Grants $2,454,395
   Federated Campaigns $34,150
   Membership Dues $8,144
   Fundraising Events $1,558,687
   Related Organizations $50,000
   Government Grants $0
Total Contributions $4,105,376
   Program Service Revenue $1,884,102
Total Primary Revenue $5,989,478
   Other Revenue $-498,037
TOTAL REVENUE $5,491,441
   
EXPENSES (Adjusted)  
   Program Expenses $4,559,483
   Administrative Expenses $507,079
   Fundraising Expenses $801,971
TOTAL FUNCTIONAL EXPENSES $5,868,533
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-377,092
   
Net Assets $8,679,688

Charts

Compensation % of Expenses Paid to Title Compensation from Affiliates
$186,994 3.18% Kari L. Rosbeck President, CEO $3,463
Other Salaries of Note
$199,841 3.40% Steven L. Roberds Chief Scientific Officer --

Mission

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.

Highly Rated

Charity Name & State Overall Score Overall Rating
Tuberous Sclerosis Alliance (MD) 92.95 four stars
Jeffrey Modell Foundation (NY) 93.94 four stars
Scleroderma Foundation (MA) 93.81 four stars
Organization for Autism Research (VA) 94.75 four stars
The Glaucoma Foundation (NY) 87.48 three stars

Compare These Charities (Highly Rated)

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