Medical Research

National Tuberous Sclerosis Association Inc

  • Silver Spring, MD
  • www.tsalliance.org

Mission Statement

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

Main Programs

  1. Science and Medical Research
  2. Individual and Family Services

service areas

International

Self-reported by organization

ruling year

1975

chief executive for fy 2007

Ms. Kari Luther Rosbeck

Self-reported by organization

Keywords

tuberous, sclerosis, TS Alliance, epilepsy, autism, TSC, tuberous sclerosis complex

Self-reported by organization

Sign in or create an account to view Form(s) 990 for 2015, 2014 and 2014.
Register now

EIN

95-3018799

Also Known As

Tuberous Sclerosis Alliance

Contact

Cause Area (NTEE Code)

Alliance/Advocacy Organizations (H01)

Alliance/Advocacy Organizations (G01)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Programs + Results

How does this organization make a difference?

Impact statement

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.

Programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

Self-reported by organization

Program 1

Science and Medical Research

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.

Category

Budget

$1,846,707.00

Population Served

Disabled, General or Disability Unspecified

None

Program 2

Individual and Family Services

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.

Category

Budget

$1,481,193.00

Population Served

Disabled, General or Disability Unspecified

None

Charting Impact

Five powerful questions that require reflection about what really matters - results.

Self-reported by organization

  1. What is the organization aiming to accomplish?
    Goal 1: Accelerate research.

    We will accelerate the progress in TSC research through federal funding, a database, TS Alliance funded research, collaborations and a clinical network.

    Goal 2: Support and empower consumers.

    We will support quality TSC care and empower consumers in diverse communities to access it.

    Goal 3: Educate and mobilize to increase investment

    We will educate the public about those affected by TSC and the benefits of increased investment in TSC research for related disorders such as Autism, Epilepsy, and LAM, and mobilize them to join and support our programs in order to increase annual revenue from $4.185 million (FY13) to $5.5 million by 2018 from both philanthropic and non-philanthropic sources.

    Goal 4: Build and strengthen organization

    We will build organizational unity and capacity to strengthen the economic viability and growth of the TS Alliance in order to achieve our mission.
  2. What are the organization's key strategies for making this happen?
    Goal 1: Accelerate research.
    Advocate for federal and state funding of novel and innovative therapies
    Expand usage of Natural History Database
    Develop TSC Biosample Repository as an asset to the medical community
    Focus TS Alliance Grants to promising researchers starting their careers
    Foster partnerships that synergize with consortium grants and industry sponsorships
    Grow Clinical Research Consortium

    Goal 2: Support and empower consumers.
    Identify additional persons affected by TSC to broaden reach of initiatives
    Attract patients and physicians with services and resources at TSC Clinics
    Enhance online presence of Community Alliances (CAs) and Adult Regional Coordinators (ARCs)
    Attract new volunteers via appeal to a broad range of demographic segments
    Expand Global Alliance program

    Goal 3: Educate and mobilize to increase investment
    Broadcast the TSC and TS Alliance story to widespread audiences via effective and efficient communications
    Implement new development campaigns and partnerships with foundations, state organizations and individuals
    Emphasize the role and opportunities associated with Endowment via estate planning and gift annuities
    Explore the use of crowdsource fundraising techniques to complement current technology already in use

    Goal 4: Build and strengthen organization
    Continue emphasis on systems and processes that encourage efficient and effective operations consistent with Charity Navigator (CN) guidelines
    Trumpet the scientific and medical link of TSC to other diseases and disorders as the “face" of TSC among peer diseases and disorders organizations, medical and related professionals, foundations, potential donors and constituents
    Build the board of directors around skill sets needed to realize the strategic plan and remain engaged with outgoing directors
    Invest in staff/skill development
  3. What are the organization's capabilities for doing this?
    With a professional staff of 16, the TS Alliance is governed by a 19-member Board of Directors comprised of people affected directly by the disease and business professionals. The organization placed strategic focus on improving business operations and achieved a four-star rating from Charity Navigator, the Guidestar Gold Exchange Seal, and named a 2015, 2014, 2013 and 2012 Top Nonprofit from GreatNonprofits.

    The staff and Board are supported by an army of more than 1,800 volunteers who work together to improve the quality of life for every individual affected by TSC by focusing on three main pillars:

    Research: TS Alliance supports basic, translational and clinical research and believes a multi-pronged approach to research is the key to finding better treatments and a cure. We have awarded more than $18 million research grants since 1984, and launched the Unlock the Cure Campaign in 2011 to fund the next wave of TSC-specific research needed to move potential treatments from pre-clinical testing to clinical trials in the community. 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, the first TSC Natural History Database and some of the first clinical trials that have now led to two FDA approved indications to shrink brain and kidney tumors associated with TSC. Research is directed by CSO Steve Roberds with guidance from an International Scientific Advisory Board.

    Advocacy: For 15 years, grassroots volunteers have worked tirelessly to create a vibrant government advocacy program with the goal of making sure the Federal government continues to focus time, energy and dollars on TSC research. These efforts have translated into more than $268 million in Federal funding for TSC research since 2002 through the National Institutes of Health and appropriations to the Department of Defense's Congressionally Directed Medical Research program.

    Outreach: Our community outreach encompasses a broad spectrum of activities, each designed to offer support and provide education. We have diversified the way we support the TSC community including the addition of social media, TSC clinic ambassadors, dependent adult transition resource coordinators, adult regional coordinators, educational liaison program, videos on relevant topics, and active leadership in TSC International. We continue our traditional support programs: robust website; full-time advocate; Community Alliances/volunteer branches of the organization in 35 locations; educational meetings; informational teleconferences; TSC Connect offering peer support; publications including a national magazine, targeted brochures and information sheets on TSC manifestations; and a professional advisory board.
  4. How will they know if they are making progress?
    Goal 1: Accelerate research
    Reach a level of annual research funding of $3.25MM by 2018
    Enroll 2,000 participants in Natural History Database by 2015
    Plan/implement a TSC Biosample Repository by 2015; collect 1000 blood samples and 200 tissue samples from Nat. History Database participants by 2018
    Issue 6 grants annually in the total amount of $450K
    By 2018, establish working relationship with 4 industry partners actively developing new TSC therapeutics
    Add 3 additional sites to expand geographical and lifespan diversity of the Clinical Research Consortium and obtain $20 million in industry/government funding to conduct clinical studies from 2014-2018

    Goal 2: Support and empower consumers
    Establish new relationships with 10,000 individuals/families added to constituent database including 4,000 newly identified individuals with TSC by 2018
    By office visit or telemedicine, increase the number of individuals with TSC to 6,500 being served by a TSC Clinic and assure 80% of clinics provide services to both children and adults by 2018
    Increase peer to peer support from ARCs, Clinic Ambassadors, Dependent Adult Transition Resource Coordinators and CA meetings and gatherings from 2,200 to 4,400 by 2018, facilitated by online presence
    Identify and cultivate a minimum of 200 new CA volunteers by 2018 with eye toward possible community leadership, board or committee roles
    Establish two global alliances by 2015 and three additional by 2018

    Goal 3: Educate and mobilize to increase investment
    Secure 10 million impressions annually via multiple and varied outlets with minimum investment
    Create 1-2 new research fundraising campaigns with $5 million in incremental funding
    Realize $250,000 contribution from Endowment Funds on an annual basis by 2018
    Mobilize grassroots community through budgeted special events to raise $1.5 million average net annually over next five years

    Goal 4: Build and strengthen organization
    Achieve at minimum 3% annual increase in program expenses with balanced budget; 80/20 program/expense ratio with revenue of $5.5 million by 2018 while obtaining 4 star CN rating
    Participate in 15 professional and industry conferences (nat'l/int'l) annually
    Recruit 2-5 diverse new Board members members annually with financial acumen, clinical or scientific expertise, biotech/pharma business experience, or ability to raise substantial funds to support research and community initiatives
    Maintain a 70% staff retention rate outside of retirements and build redundant skill sets among current and/or planned staff members
    Develop succession plans for top executive staff
  5. What have and haven't they accomplished so far?
    • Accelerate research: We completed 2015 with $1,705,098 in research funding; the Natural History Database finished 2015 with 1,850 participants from 17 TSC Clinics; workshops were held for the development of a 5-10 year research plan hosted by NINDS and for the development of the TSC Biosample Repository and Preclinical Consortium; samples from the RDCRN were sent to begin the collection at the Biosample Repository and contracts with Miami Children's and Texas Scottish Rite Hospital were executed as pilot locations for sample collection; $730,081 was awarded for four new research grants; active discussions continue with industry particularly around the development of the Preclinical Consortium; a grant pending at NIH for $5 million will also expand the Clinical Research Consortium to 2 additional sites in 2016.
    • Support and empower constituents: more than 4,358 new constituents were added to the database in 2015; discussions continue with TSC Clinics regarding adult and transition care and two new TSC Clinics were added; in 2015 peer support increased to 7,413; 51 new volunteers were recruited in 2015; discussions were held with four prospective Global Alliances but no new ones were added in 2015.
    • Educate and mobilize increase investment: May 15, 2015 awareness day satellite media tour, sponsored by Novartis, reached 4.8 million; #IAMTSC PSAs led to 22,665,735 impressions as of November 30; Unlock the Cure: ACT Now! campaign launched; current TS Alliance Endowment Fund contribution is $202,000 annually; FY2015 unaudited Special Event net was $1,429,000.
    • Build and sustain organization: program expenses increased 5.7% from 2013 to 2014 with 76.5% program to 23.5% administrative ratios; staff members participated in 18 national and international professional conferences in 2015; five new board members were elected and begin terms in January 2016, one with auditing experience, one with professional government advocacy experience, one a President of a company and TSC parent with HR experience and financial acumen, and a grandparent who has served as CFO of his company; staff retention was at 85.7% in 2015.

service areas

International

Self-reported by organization

Social Media

@tsalliance

@tsalliance

@+TuberousSclerosisAllianceSilverSpring

@company/tuberous-sclerosis-alliance

@tsalliance

@tsalliance

Funding Needs

Unlock the Cure campaign will raise $5 million over the next three years to implement the next generation research programs needed to move potential treatments from the lab to the TSC community in a more expedited way, including:  Drug Discovery to identify FDA approved drugs that can be “repurposed" for treatment in TSC or uncovering new compounds that could lead to new treatments; Biomarkers needed for future clinical trials, which will be a requirement for measuring progression of disease and effectiveness of new treatments; Clinical Research Network to expedite implementation of future clinical trials; TS Alliance-supported research to ensure we have a pipeline for basic and translational studies; 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.

External Reviews

The review section is powered by Great Nonprofits
Source: greatnonprofits.org

Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2014
  • Board Chair and Board Members
  • Access to the GuideStar Community
Get all this now for free
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

Operations

The people, governance practices, and partners that make the organization tick.

National Tuberous Sclerosis Association Inc

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2014
  • Board Chair and Board Members
  • Access to the GuideStar Community
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

CHIEF EXECUTIVE FOR FISCAL YEAR

Ms. Kari Luther Rosbeck

BIO

Kari Luther Rosbeck, President and CEO, has been with the TS Alliance since June 2001. During her tenure as President and CEO since November 2007, the TS Alliance established a comprehensive research program, fostering collaboration with industry and academia, in order to move treatments for tuberous sclerosis complex (TSC) forward in a more expedited way. The "Unlock the Cure" campaign with a research strategy focused on key points along the drug discovery path: increasing funding for TS Alliance Grants Program; advancing Drug Screening; developing a Clinical Research Consortium to expedite implementation of future clinical trials and recruit for clinical studies; identifying biomarkers; and, expanding the TSC Natural History Database. "Unlock the Cure" is also a capital fundraising campaign, raising $4.6 million for research from 2011-2014. Rosbeck also played an active role in the development of the first clinical trial for neurocognition in TSC. In the past seven 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 served as Executive Vice President, overseeing 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 25 years.

STATEMENT FROM THE CEO

"It is a tremendous honor to work on behalf of the TSC community.  Over the past 42 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 7,000 rare diseases, only 5% 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."

Governance

BOARD CHAIR

David Fitzmaurice

Sealed Air

Term: Jan 2016 - Dec 2016

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

Yes

BOARD ORIENTATION & EDUCATION

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

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Yes

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?


ORGANIZATIONAL DEMOGRAPHICS

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

Gender
This organization reports that it does not collect this information for Volunteers.
Race & Ethnicity
This organization reports that it does not collect this information.
Napalese
Sexual Orientation

This organization reports that it does not collect this information.

Disability
This organization reports that it does not collect this information.