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National Tuberous Sclerosis Association Inc Organization Name provided in the GuideStar Exchange* as of 07/03/2013: National Tuberous Sclerosis Association Inc

Organization Name as listed in the IRS Business Master File as of 06/09/2014: NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC

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AKA  Tuberous Sclerosis Alliance
Silver Spring, MD
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit and Charting Impact Report are available
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Basic Organization Information

National Tuberous Sclerosis Association Inc Organization Name provided in the GuideStar Exchange* as of 07/03/2013: National Tuberous Sclerosis Association Inc

Organization Name as listed in the IRS Business Master File as of 06/09/2014: NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC

* The 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.
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.

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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Annual Revenue & Expenses (GuideStar Exchange,
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July 2013)

Fiscal Year Starting: January 1, 2012
Fiscal Year Ending: December 31, 2012

Total Revenue $3,443,549
Total Expenses $3,587,830

Revenue & Expenses (GuideStar Exchange,
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July 2013)

Fiscal Year Starting: January 1, 2012
Fiscal Year Ending: December 31, 2012

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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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.

Board Chair (GuideStar Exchange,
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July 2013)

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Board Co-Chair

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July 2013)

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Board Leadership Practices (GuideStar Exchange,
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July 2013)
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Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in July 2013

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Programs

Program: (GuideStar Exchange,
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July 2013)

Budget:
--
Category:
Population Served:

Program Description:

1. Family Services develops programs and services that provide individuals with tuberous sclerosis crisis counseling and direct access to the information, resources and specialists experienced in the diagnosis, treatment, and management of tuberous sclerosis. 2. Research stimulates and supports genetic, clinical and basic research into the various manifestations of tuberous sclerosis to further the development of genetic testing, gene therapy and clinical therapies. 3. Public Health Education heightens awareness of tuberous sclerosis throughout the general public to broaden the scope of support and understanding beyond the tuberous sclerosis individuals and their families. 4. Professional Education expands programs targeting those specialists who treat patients with tuberous sclerosis, medical students, genetic counselors and educators to minimize the tragic consequences of ignorance and misinformation. 5. Government Relations focuses on obtaining federal resources for tuberous sclerosis research, clinical care and information dissemination.

Program Long-Term Success:

TS Alliance expanded TSC Natural History Database to 6 additional TSC Clinics for a total of 14 participating sites with over 300 participants.

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Science and Medical Research (GuideStar Exchange,
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July 2013)

Budget:
$1,676,453
Category:
Medical Research
Population Served:
Disabled, General or Disability Unspecified

Program Description:

The Research Program stimulates and supports basic, translational and clinical research on the various manifestations of tuberous sclerosis complex (TSC) to further the development of clinical therapies, and ultimately a cure for TSC.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Individual and Family Services (GuideStar Exchange,
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July 2013)

Budget:
$508,619
Category:
Human Services
Population Served:
Disabled, General or Disability Unspecified

Program Description:

Family Services develops programs and services that provide individuals with TSC direct access to the information, resources, and specialists experienced in the diagnosis, treatment and management of TSC.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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