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National Tuberous Sclerosis Association Inc

AKA Tuberous Sclerosis Alliance

Silver Spring, MD

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National Tuberous Sclerosis Association Inc

Also Known As:
Tuberous Sclerosis Alliance
Physical Address:
Silver Spring, MD 20910 
EIN:
95-3018799
Web URL:
www.tsalliance.org
Leadership:
Ms. Kari Luther Rosbeck
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Legitimacy Information

  • This organization is registered with the IRS.
  • This organization is required to file an IRS Form 990 or 990-EZ.

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Forms 990 from IRS Additional Information IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar Web site is an ongoing process.

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A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

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Annual Revenue & Expenses Additional Information Financial information on GuideStar is either digitized from Form 990 images we receive from the IRS or submitted by the nonprofits themselves through the GuideStar Exchange (990 filers cannot override Form 990 financial data). If your organization does not file a Form 990, 990-EZ, or 990-PF and you would like to have your financial data displayed in this section, join the GuideStar Exchange today!

Fiscal Year Starting: Jan 1, 2012
Fiscal Year Ending: Dec 31, 2012
Revenue
Total Revenue $3,443,549
Expenses
Total Expenses $3,587,830

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Financial data from Forms 990 for Year 2012, 2011, 2010, 2010, 2009 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.



GuideStar Exchange Member

This organization is a Gold-level GuideStar Exchange participant, demonstrating its commitment to transparency.

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Basic Organization Information

National Tuberous Sclerosis Association Inc

Also Known As:
Tuberous Sclerosis Alliance
Physical Address:
Silver Spring, MD 20910 
EIN:
95-3018799
Web URL:
www.tsalliance.org 
NTEE Category:
H Medical Research 
H01 Alliance/Advocacy Organizations 
G Disease, Disorders, Medical Disciplines 
G01 Alliance/Advocacy Organizations 
Year Founded:
1974 
Ruling Year:
1975 
How This Organization Is Funded:
TS Alliance Endowment Fund - $202,000
Harold Simmons Foundation - $175,000
Wenthworth Charities - $125,000

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Mission Statement

The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected.

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.

Financial Data

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Revenue and Expenses

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Revenue and Expense data from Forms 990 for 2012, 2011, 2010, 2010, 2009 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart


Balance Sheet

Balance Sheet data from Forms 990 for Year 2012, 2011, 2010, 2010, 2009 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.


Forms 990 Provided by the Nonprofit

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Forms 990 Provided by the Nonprofit for 2012, 2012, 2011, 2010, 2009 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart


Financial Statements

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Annual Reports

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Leadership (GuideStar ExchangeThe GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more. July, 2013)

Ms. Kari Luther Rosbeck

Profile:

Kari Luther Rosbeck, President and CEO, was formerly the Executive Vice President, and has been with the TS Alliance since June 2001. During her tenure as President and CEO since November 2007, the TS Alliance established a Drug Screening Program to foster collaboration with industry and academia in order to move treatments for tuberous sclerosis complex (TSC) forward in a more expedited way, and played an active role in the development of the first clinical trial for neurocognition in TSC. In just the past four years, there have been FDA approvals for two therapies to combat infantile spasms, the most catastrophic form of epilepsy that up to 40% of infants with TSC may experience, and two approvals of a drug with a TSC indication, specifically SEGA and AMLs associated with TSC. Because of Kari’s leadership, the organization has taken an active role in educating the TSC community about clinical trials to diminish the time for recruitment. Ms. Rosbeck previously oversaw the national volunteer outreach program and was responsible for fund development. She developed and implemented a vast national network of more than 30 volunteer branches called Community Alliances; increased volunteer participation from 90 individuals to more than 2,000; and through her involvement in special events and major gift fundraising, helped increase the annual revenue by more than 50%. Rosbeck has been involved in nonprofit fundraising and volunteer management for more than 20 years.

Leadership Statement:

It is a tremendous honor to work on behalf of the TSC community.  Over the past 39 years, incredible strides have been made in the fights against TSC.    The TS Alliance has served as a catalyst – first with the discovery of the TSC genes; second, the genetic pathway; and third in bringing together the research community for research conferences that have led to the clinical trials taking place today and two FDA-approved indications for TSC. Of the 6,000 rare diseases, only 200 have approved treatments; TSC is one of them.  These advances have only been made possible through the generous partnership of compassionate individuals, foundations and corporations with a vested interest in important scientific breakthroughs.    For the first time, evidence exists that research will help not only the newly born and the newly diagnosed, but will also have an impact on the lives of those living with TSC today.  We hope you will join us to Unlock the Cure.



Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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Organization Data Available

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