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National Tuberous Sclerosis Association

Tsc Alliance

Learn about this cause: What are the reviews? Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 953018799 ✦ Silver spring, MD ✦ Designated as a 501(c)(3)

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Overview

What is National Tuberous Sclerosis Association?

The National Tuberous Sclerosis Association, commonly known as TSC Alliance, is a nonprofit organization situated in Silver Spring, Maryland. With a staff of 27 individuals, their primary mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. They are dedicated to this cause through extensive research programs, though further details can be found in Schedule O. Their activities are centered around finding a solution for TSC, thereby enhancing the quality of life for those impacted by the condition.


Official website here: www.tscalliance.org

What are the reviews and ratings of this charity?

**Charity : Charity Navigator Rating 96% (Four-Star out of Four Stars)**tar)**

The National Tuberous Sclerosis Association (NTSA) has received a commendable Four-Star rating from Charity Navigator, reflecting its strong commitment to accountability and financial management. With a perfect score in the Accountability & Finance category, the organization demonstrates robust governance practices, including an independent board and comprehensive policies that safeguard its assets. The NTSA's financial health is underscored by a program expense ratio of over 79%, indicating a significant dedication to direct program services for individuals affected by tuberous sclerosis.

In terms of impact and measurement, the NTSA scores an impressive 86%. While the organization shows strengths in program planning and data reporting, there is room for improvement in data collection and analysis. Nevertheless, its high scores across leadership, community culture, and adaptability illustrate the organization's effective and responsive management as it works toward its mission of improving the quality of life for those impacted by tuberous sclerosis complex.

User reviews from GreatNonprofits could not be fetched, but the NTSA's strategic goals, which include accelerating research and empowering constituents, suggest a forward-thinking approach that resonates well with the community it serves. Overall, the organization is positioned as a leader in the nonprofit sector dedicated to those living with tuberous sclerosis, and its rating reflects its operational effectiveness and commitment to its mission.


This AI summary has been generated from information found on Charity Navigator.

Is National Tuberous Sclerosis Association legitimate?

National Tuberous Sclerosis Association is a legitimate nonprofit organization registered as a 501(c)(3) entity. National Tuberous Sclerosis Association submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.


Heare are some key statistics you may want to consider:

Executive Compensation: $726,880
Professional Fundraising Fees: $0
Other Salaries and Wages: $1,744,717

For more financial information, click here


Official website here: www.tscalliance.org

What is the mission statement of National Tuberous Sclerosis Association?

The National Tuberous Sclerosis Association, often referred to as TSC Alliance, is committed to finding a cure for Tuberous Sclerosis Complex and enhancing the lives of those affected by it. Their mission is to dedicate resources towards research, with detailed information available in their scheduled programs. The organization's ultimate goal is to improve the quality of life for individuals living with Tuberous Sclerosis Complex. They strive to serve as a reliable source of support for these individuals and their families, providing them with necessary information, resources, and emotional assistance. The TSC Alliance also collaborates with various entities to advance understanding, advocacy, and care for individuals affected by Tuberous Sclerosis Complex.


Official website here: www.tscalliance.org

Who is the CEO of National Tuberous Sclerosis Association?

Kari L Rosbeck is the Chair of National Tuberous Sclerosis Association. The CEO's salary of National Tuberous Sclerosis Association is $217,716 and their total compensation is $249,382.


Official website here: www.tscalliance.org

What is the revenue of National Tuberous Sclerosis Association?

National Tuberous Sclerosis Association's revenue in 2022 was $8,909,542.


Official website here: www.tscalliance.org

Who are the executives of National Tuberous Sclerosis Association and what are their salaries?

The average compensation at National Tuberous Sclerosis Association during 2022 was $91,541. There are 27 employees and 2534 volunteers at National Tuberous Sclerosis Association.


Here are 39 key members and their salaries (National Tuberous Sclerosis Association's CEO's salary is $217,716 and their total compensation is $249,382):


Peter Crino Md Phd (Chair)
  • Compensation: $0
  • Related: $0
  • Other: $0
William Joseph (Vice Chair)
  • Compensation: $0
  • Related: $0
  • Other: $0
Paul Waxlax (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jessica Krefting (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Derek Bauer (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Julie Blum (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Matt Bolger (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Edward Burkhalter (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Lisa Carlton (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Mark Carroll (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Sara Chieffo (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
David Coit (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Margaret Cox (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Julian Gangolli (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Tanjala Gipson (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Steven Goldstein (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Rob Grandia (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Dana Holinka (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Lesley Holmes (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Darcy Krueger (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Patroski Lawson (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Kristi Lengyel (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Heather Lens (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Laura Marks (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Diane Mcswain (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Mustafa Sahin (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Sean Shillinger (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Brittany Smith (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Vanessa Vazquez (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Tara Zimmerman (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Kari Luther Rosbeck (President & Ceo)
  • Compensation: $217,716
  • Related: $2,756
  • Other: $28,910
Cynthia Arcuri (Chief Financial Officer)
  • Compensation: $146,692
  • Related: $11,324
  • Other: $9,841
Richard Gollub (Chief Financial Officer)
  • Compensation: $80,583
  • Related: $4,241
  • Other: $8,795
Steven Roberds (Chief Scientific Officer)
  • Compensation: $233,206
  • Related: $0
  • Other: $26,309
Dean Rager-Aguiar (Vice President, Translational Research)
  • Compensation: $164,261
  • Related: $0
  • Other: $27,214
Lisa Moss (Vice President, Donor Relations)
  • Compensation: $122,204
  • Related: $0
  • Other: $23,858
Jaye Isham (Senior Vice President, Strategic Communications)
  • Compensation: $133,868
  • Related: $0
  • Other: $4,136
April Cooper (Vice President, Community Programs)
  • Compensation: $114,370
  • Related: $0
  • Other: $25,298
Ashley Pounders (Director Of Medical Affairs)
  • Compensation: $111,519
  • Related: $0
  • Other: $13,976


Official website here: www.tscalliance.org

Where can I find the form 990 for National Tuberous Sclerosis Association?

National Tuberous Sclerosis Association's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.tscalliance.org

Learn more at the official website: www.tscalliance.org

Mission Statement of National Tuberous Sclerosis Association

The National Tuberous Sclerosis Association, often referred to as TSC Alliance, is committed to finding a cure for Tuberous Sclerosis Complex (TSC) while enhancing the lives of those affected by this condition. Their mission is centered around two primary objectives: conducting research programs to uncover potential cures for TSC and providing support to improve the quality of life for individuals living with this complex disorder. The association's dedication to finding a cure and improving lives is a testament to their unwavering commitment towards making a significant impact in the TSC community.

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Impact




July, 2024

The National Tuberous Sclerosis Association's impact is focused on finding a cure for tuberous sclerosis complex while also improving the lives of those affected by the disease. Through their research programs and dedicated efforts, they strive to advance the understanding and treatment of tuberous sclerosis complex, ultimately aiming to enhance the quality of life for individuals living with this condition. Their mission underscores a commitment to both scientific progress and the well-being of patients, making a significant difference in the fight against this disease.




This information is meant to be a general summary of National Tuberous Sclerosis Association. Please take the time to review official sources before making any decisions based upon the content provided here.


Financials

This financial information is from Propublica.

Revenue
$8,909,542 (2022)
Expenses
$8,063,684 (2022)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Investment Income: $2,636
  • Program Service Revenue: $2,720,317
  • Gross Receipts: $9,035,766

Assets and Liabilities:

  • Total Assets: $14,827,937
  • Total Liabilities: $2,373,091
  • Net Assets: $12,454,846

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Programs

Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.

CONTRACT REVENUE

Revenue

$1,906,672

CONFERENCE REVENUE

Revenue

$813,645

Organization Details

Founding Year

1975

Principal Officer

Kari L Rosbeck

Main Address

8737 COLLESVILLE ROAD 400, SILVER SPRING, MD, 20910

NTEE Category

Code: G030 - Disease

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