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National Tuberous Sclerosis Association Inc Organization Name provided in the GuideStar Exchange* as of 09/25/2014: National Tuberous Sclerosis Association Inc

Organization Name as listed in the IRS Business Master File as of 09/08/2014: NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC

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AKA  Tuberous Sclerosis Alliance
Silver Spring, MD
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GuideStar Summary

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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 09/25/2014: National Tuberous Sclerosis Association Inc

Organization Name as listed in the IRS Business Master File as of 09/08/2014: 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 - $197,200
Harold Simmons Foundation - $150,000
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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September 2014)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

Total Revenue $4,185,857
Total Expenses $4,121,056

Revenue & Expenses (GuideStar Exchange,
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September 2014)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

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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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September 2014)

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 five years, there have been FDA approvals for two therapies to combat infantile spasms, the most catastrophic form of epilepsy that up to a third 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 40 years, incredible strides have been made in the fight 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 450 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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September 2014)

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Board Co-Chair

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Board of Directors (GuideStar Exchange,
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September 2014)

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Board Leadership Practices (GuideStar Exchange,
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September 2014)
?

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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?
Yes
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?
Yes
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?
Yes
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?
Yes
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?
Yes

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in September 2014

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Programs

Program: Science and Medical Research (GuideStar Exchange,
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September 2014)

Budget:
$1,846,707
Category:
None
Population Served:
Disabled, General or Disability Unspecified
None
None

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:

In 1984, the TS Alliance established its research grants program, which funds more than $1 million per year, and to date has cumulatively funded nearly $18 million. Over the years, TS Alliance-funded research has led to major discoveries, including the identification of the two genes that cause TSC, the development of a genetic test, some of the first clinical trials which led to the approval of the first U.S. Food and Drug Administration (FDA)-approved drug for a TSC indication, and much more. The TS Alliance Grants Program also administers the Rothberg Courage Award in Research, which supports innovative research to find treatments and, ultimately, a cure for TSC.

Program Short-Term Success:

In 2011, the TS Alliance, under the direction and vision of the nominee, created the Unlock the Cure campaign. Unlock the Cure is a fundraising platform and focused strategic initiative to implement the next generation research program needed to move potential treatments from the lab (pre-clinical) to the TSC community (trials) in a more expedited way. Implementation of this research program includes: i) advancing a Drug Discovery Program to identify FDA-approved drugs that can be “repurposed” for treatment in TSC or uncovering new compounds that could lead to new treatments ii) identifying Biomarkers needed for future clinical trials, which will be a requirement for measuring progression of disease and effectiveness of new treatments iii) developing a Clinical Research Network to expedite implementation of future clinical trials and be better able to recruit individuals for clinical studies iv) increasing funding of TS Alliance-Supported Research to ensure we have a pipeline for basic and translational studies to feed our Drug Discovery Program v) expanding the TSC Natural History Database to help us identify lifelong trends in the physical traits of TSC to improve quality of life and long-term outcomes and to develop a method of quickly identifying individuals for future clinical trials The campaign’s goal is to raise a total of $5 million over three years. In two years, $4 million has been raised with the support of a matching challenge grant from the Harold Simmons Foundation. Research has already benefited dramatically from this campaign as demonstrated in the following table. Unlock the Cure Campaign: Natural History Database: Began at 1,100 participants and now 1,300 enrolled Research Grants Began with a broad portfolio and now fund grants focused on clinical relevance Drug Screening: 2 projects were launched prior to Unlock the Cure and now we have funded a total of 6 projects with 12 targets identified Clinical Research Network (CRN): this was a concept prior to the campaign and now the CRN is running 3 clinical studies Biomarkers: this was just an Idea in 2011 and today there are 4 projects funded

Program Success Monitored by:

The board of directors sets annual goals for Science and Medical that are monitored quarterly for progress. Staff prepare monthly reports on status of activities toward achievement of scientific objectives.

Program Success Examples:

The development of a Clinical Research Network required the commitment of TS Alliance staff, clinical community and an organizational invest in the infrastructure. The TS Alliance awarded a grant of $352,752. The Clinical Research Network applied and received $16 million in National Institutes of Health grants, leveraging TS Alliance funds, to initiate two studies aimed at finding early indicators of which infants with TSC would develop autism or infantile spasms, a catastrophic type of epilepsy experienced by a third of infants with TSC. These studies have recruited ahead of schedule with assistance from the TS Alliance in educating the TSC community.

Program: Individual and Family Services (GuideStar Exchange,
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September 2014)

Budget:
$1,481,193
Category:
None
Population Served:
Disabled, General or Disability Unspecified
None
None

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:

Supporting anyone and everyone affected by TSC is a major focus of the TS Alliance, and information is one of the most significant ways the TS Alliance empowers those we serve. Our community outreach efforts encompass a broad spectrum of activities, each designed to offer support and provide education. Over the past five years, the TS Alliance has increased and diversified the way we support the TSC community including the addition of social media, clinic ambassadors, adult regional coordinators, educational liaison program, videos on relevant topics, and active participation and leadership in TSC International. We also continue our traditional support programs: robust website; full-time advocate; Community Alliances or volunteer branches of the organization in 32 locations; educational meetings such as Town Hall Meetings and Regional Conferences; informational teleconferences; TSC Connect offering one-on-one peer support; publications including a national magazine, targeted brochures and information sheets on TSC manifestations; and a professional advisory board.

Program Short-Term Success:

In 2014, the TS Alliance organized and hosted the World TSC Conference, July 3-6 in Washington, DC. The goals of the conference were to provide TSC community members the opportunity to: *interact with community members from across the United States and around the globe; * learn about the most up-to-date medical breakthroughs directly from the world’s top researchers and clinicians; * access services and resource providers in the TSC Resource Center and Exhibit Hall; and * network and interact in both formal and informal settings. The results of the conference were as follows: • A total of 689 individuals from 20 countries attended the World TSC Conference including: conference registrants (419), speakers (78), staff (16), exhibitors (36), day camp staff (45) and children (95). • 11% of attendees were international. • 89% domestic attendance traveled from 44 states: 59% from the East Coast, 20% from the Midwest and 10% from the West Coast. • 267 (68.83%) attendees had never been to a National Conference and 111 have not been previously engaged as volunteers. • A TSC International meeting was held on July 3 to plan for future international collaboration. • Daily postings on social media included highlights of sessions along with appropriate TS Alliance resources and videos, including a Government Advocacy video that debuted during the Conference. • A photo montage was posted on Facebook following the Conference. The conference consisted of 48 sessions and five educational tracks: pediatric, transition, adult, specialty and research. In addition, there were concurrently run group and meet-the-expert sessions. Group sessions provided a conversational forum to discuss topics relevant to a smaller population of those affected by TSC (e.g.: Women’s Health Issues). Thirty-four conference sessions were videotaped and posted on the TS Alliance website. A thorough analytical report of the conference will be included in materials for the October Board meeting, and an oral report will also be included in presentations during the meeting.

Program Success Monitored by:

The board of directors sets annual goals for Outreach that are monitored quarterly for progress. Staff prepare monthly reports on status of activities toward achievement of scientific objectives. Each year, we also prepare and publish on our website the State of the TSC Communities report, which analyzes services by each state and internationally.

Program Success Examples:

This summer we launched the Dependent Young Adult Transition Resource Coordinator program. This is a pilot to offer peer support to TSC families that are preparing or in the midst of a transition from childhood to adult service programs. This was identified as a tremendous need in a constituent survey; the board developed this as a goal for services; and the staff designed and implemented the program.
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