Category: Diseases and Disease Research

National Tuberous Sclerosis Association Inc

AKA Tuberous Sclerosis Alliance

Silver Spring, MD

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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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GuideStar Seal	Committed to transparency
Registered with IRS	Legitimacy information is available
Financial Data	Annual Revenue and Expense data reported
Forms 990	2011, 2010, and 2010 Forms 990 filed with the IRS
Mission Objectives	Mission Statement is available
Impact Summary	Impact Summary from the nonprofit is available

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 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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Fiscal Year Starting: Jan 1, 2011
Fiscal Year Ending: Dec 31, 2011

Revenue
Total Revenue	$3,981,948

Expenses
Total Expenses	$3,650,772

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Financial data from Forms 990 for Year 2011, 2010, 2010, 2009, 2008 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

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.

View Sample Report

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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:: 1975
Ruling Year:: 1975

Mission Statement

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

Expert Assessment

There are no Expert Reviews for this organization. Learn more about TakeAction@GuideStar.

Impact Summary from the Nonprofit

Every dollar spent finding cures and treatments for tuberous sclerosis complex (TSC) can bring about quantum leaps in the cures for autism, epilepsy and cancer – diseases that touch most everyone all of us know and love.

Personal Reviews

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.

View Sample Report

More Information

FAQs on Financial Data | Digitizing IRS Form 990 Data

Financial Data

Revenue and Expenses

Revenue and Expense data from Forms 990 for 2011, 2010, 2010, 2009, 2008 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

Balance Sheet

Balance Sheet data from Forms 990 for Year 2011, 2010, 2010, 2009, 2008 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

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.

View Sample Report

More Information

Forms 990 Received from the IRS 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.

Forms 990 for 2011, 2010, 2010, 2009, 2008 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

Forms 990 Provided by the Nonprofit

Financial Statements

Financial Statements for 2011, 2010, 2010 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

Annual Reports

Formation Documents A Letter of Determination is a letter from the IRS to a nonprofit organization stating that the organization has successfully applied for tax-exempt status. In this document the IRS indicates under which section of the Internal Revenue Code an organization is qualified.

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Leadership

Ms. Kari Luther Rosbeck

Term:

Since Nov 2007

Profile:

Kari Luther Rosbeck, President and CEO, was formerly the Executive Vice President and has been with the organization since June 2001. During her tenure as CEO, the TS Alliance has established a Drug Screening Program, to foster collaboration with industry and academia in order to move treatments for tuberous sclerosis complex 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 two years, there have been FDA approvals for two therapies to combat infantile spasms, the most catastrophic form of epilepsy that up to 50% of infants with TSC may experience, and the first approval of a drug with a TSC indication, specifically SEGA associated with TSC.  A second indication for TSC was approved in April of 2012, specifically for renal angiomyolipomas.  The organization has taken an active role in educating the TSC community about clinical trials in order 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.

Board Chair

Board of Directors

Officers for Fiscal Year

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Highest Paid Employees & Their Compensation

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Evidence of Impact

Expert Comments

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Organizational Strengths

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Areas for Improvement

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From the Nonprofit

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