National Tuberous Sclerosis Association Inc

Hope no matter how complex

aka TSC Alliance   |   Silver Spring, MD   |  www.tscalliance.org

Mission

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

Ruling year info

1975

President and Chief Executive Officer

Ms. Kari Luther Rosbeck

Main address

8737 Colesville Road Ste 400

Silver Spring, MD 20910 USA

Show more contact info

Formerly known as

Tuberous Sclerosis Alliance

EIN

95-3018799

NTEE code info

Alliance/Advocacy Organizations (H01)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in different organs, primarily in the brain, eyes, heart, kidney, skin and lungs, and affects approximately 50,000 individuals in the USA and 1 million worldwide. It is the leading genetic cause of epilepsy and autism. TSC Alliance believes that by using a multi-pronged approach that includes efforts directed at both research for a cure as well as support and education for the TSC community, it will maximize its impact and improve the lives of those affected with TSC. This includes: • Focusing research to better understand the course of the disease • Altering the course of the disease through prenatal diagnosis and preventative treatment to improve the quality of life of those with TSC • Assuring access to appropriate medical care and removing barriers to approved treatments • Educating medical professionals to achieve more rapid diagnosis and better treatment aligned with evidence-base

Our programs

SOURCE: Self-reported by organization

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

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.

Population(s) Served
Adults
Children and youth
Ethnic and racial groups

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.

Population(s) Served
Families
Adults
Children and youth
Ethnic and racial groups
Caregivers

Where we work

Awards

Advocacy Award of Merit 2003

Child Neurology Society

2012 Top-Rated Nonprofit 2012

GreatNonProfits

2013 Top-Rated Nonprofit 2013

GreatNonProfits

2014 Top-Rated Nonprofit 2014

GreatNonprofits

2015 Top-Rated Nonprofit 2015

GreatNonprofits

Four-Star Rating 2014

Charity Navigator

Four-Star Rating 2015

Charity Navigator

Four-Star Rating 2017

Charity Navigator

Four-Star Rating 2018

Charity Navigator

Four-Star Rating 2019

Charity Navigator

2016 Top-Rated Nonprofit 2016

GreatNonprofits

2017 Top-Rated Nonprofit 2017

GreatNonprofits

2018 Top-Rated Nonprofit 2018

GreatNonprofits

2019 Top-Rated Nonprfit 2019

GreatNonprofits

Wise Giving Program 2019

Better Business Bureau

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of funding dollars secured for demonstration projects or pilots

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Science and Medical Research

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Our goal is to invest $17.8 million from 2019 to 2023.

Number of overall donors

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Science and Medical Research

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Collect a total of 2500 blood and tissue samples for the TSC Biosample Repository by 2023 from individuals with Tuberous Sclerosis Complex.

Number of new clients within the past 12 months

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Individual and Family Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Establish relationships with 10,000 new indi/families with TSC by 2020.

Number of one-on-one coaching sessions

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Individual and Family Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Grow peer to peer support to 10,578 by 2023.

Estimated number of funding dollars secured for the sector

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Individual and Family Services

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

Mobilize grassroots community through special events net to raise $1.5 million annually (through 2023).

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

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

Goal 1: Accelerate research.
We will accelerate the progress in TSC research through federal funding, collaborative research and resource tools.

Goal 2: Improve access and quality of care.
We will support quality TSC care and empower consumers in diverse communities to access it.

Goal 3: Support and empower consumers.
We will provide support and educational services to individuals/caregivers throughout the lifespan to improve quality of life around the world.

Goal 4: 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 $5.9 million (FY18) to $11.9 million by 2023 from both philanthropic and non-philanthropic sources.

Goal 5: Build and strengthen organization
We will build organizational unity and capacity to strengthen the economic viability and growth of the TSC Alliance in order to achieve our mission.

Goal 1: Accelerate research.
Collaborate and extend partnerships with other nonprofits, academic institutes and industry to advance TSC research
Advocate for Federal research funding
Increase Preclinical Consortium productivity by engaging researchers, improving models, adapting to priorities of members
Expand capabilities of centers in the Clinical Research Consortium and fund pilot or add-on studies with pathways to outcomes.
Increase rate of biosample collection by enrolling individuals anywhere in US
Invest research grant funding in postdoctoral trainees and highly novel research ideas
Convene targeted workshops on urgent research problems and follow-up with funds

Goal 2: Improve Access and Quality of Care.
Advocate for state funding for research and/or Centers of Excellence
Develop a support hub to navigate access to FDA approved therapies
Build evidence for what constitutes high quality care for TSC
Expand knowledge of evidence-based, best practices of TSC clinical care among TSC Clinic healthcare professionals and other medical providers involved in the treatment of TSC 
Expand access to care for people in regions with no TSC Clinic or TSC-knowledgeable healthcare professionals.
Improve access and delivery of evidence-based, high quality clinical care for patients with TSC, including comprehensive adult care for inpatient and outpatient services

Goal 3: Support and empower consumers.
Create a premiere support services volunteer corps
Expand skills to advocate for and access appropriate educational services to improve quality of life
Grow collaborations with other nonprofit organizations to ensure access to resources, support services, transition tools and information
Expand reach of education and support through use of technology
Increase scientific knowledge in the TSC community
Grow and advance the Global Alliance Program

Goal 4: Educate and mobilize to increase investment
Increase capital for growth of research platform through partnerships with corporations, foundations, state organizations and individuals
Emphasize the role and opportunities associated with Endowment via estate planning and gift annuities
Leverage the unique capacity of each Community Alliance to create community-specific campaigns
Grow individual participation in crowd-funded initiatives
Broadcast the TSC and TSC Alliance story to widespread audiences via effective and efficient communications
Engage an outside PR/marketing firm to implement a new awareness campaign, bolster branding and educate the public at large about TSC

Goal 5: Build and strengthen organization
Adhere to financial management best practices consistent with Charity Navigator (CN) Guidelines while maintaining appropriate infrastructure for organization growth
Maintain constituent and supporter database complying with GDPR
Serve as a leader in the rare disease community
Develop board with skill set needed to realize the strategic plan
Invest in staff development to drive results

With a professional staff of 22, the TSC Alliance is governed by a 30-member Board of Directors as of January 1, 2022, comprised of people affected directly by the disease, such as parents or adults with TSC, as well as business professionals, researchers and clinicians. The staff and Board have achieved 100% giving to demonstrate their leadership in the fight against TSC. Since 2010, the organization has placed strategic focus on achieving recognition by industry watchdog organizations, earning a 4 Star Rating from Charity Navigator, the Guidestar Exchange Platinum Seal, accreditation by the Better Business Bureau Wise Giving Program and being named as a Top Nonprofit from GreatNonprofits from 2012-2022. The TSC Alliance is headquartered in Silver Spring, Maryland with field staff in CA, DE, MA, MI, MS, NM, PA, TN.

The staff and Board are also supported by an army of more than 2.200 volunteers. Working together, the TSC Alliance strives to improve the quality of life for every individual and family affected by TSC by focusing on three main pillars: Research, Advocacy and Outreach. Each pillar plays a pivotal role in our mission.

Research: The TSC Alliance 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. In 2011, we launched the Unlock the Cure Campaign with the goal to move potential treatments along the drug discovery path more rapidly. As a result, we have tested 63 candidate drugs in the Preclinical Consortium, enrolled more than 2,500 individuals in the Natural History Database linked with 2,250 samples in the Biosample Repository, and have engaged in two clinical biomarker studies, a rare diseases clinical research network and the first preventative clinical trial for epilepsy in the United States in TSC.

Advocacy: For more than 20 years, the TS Alliance, partners and 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 $400 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 efforts are designed to offer support and provide education. We employ a full-time nurse practitioner, offer a robust website, publish a national magazine, produce targeted brochures on TSC manifestations, and host a multi-channel digital platform. Additionally, we have grown to 34 volunteer branches covering all 50 states and six global alliances, increasing our worldwide footprint.

• Accelerate research: spent $9.1 million into research 2019-2021; $22 million appropriated for TSCRP in FY20-21; 57 mechanisms or combinations tested by Preclinical Consortium with 17 companies; 2 companies moving into clinical trials; 2000 biosamples with serial blood samples on 142 individuals, more than 100 tissues collected, 18 NHD data requests; $672,343 awarded in research grants; International TSC Research Conference held in 2019 and 2021 and Newborn Screening Innovation Workshop in 2020.

• Improve access and quality of care: state advocacy initiatives with secured appropriations of $750,000 in Missouri and $1.5 million in Maryland; 76 individuals/families received assistance in accessing FDA approved medications, ongoing relationships with 19 industry partners and four specialty pharmacy partners; TSC Focus Group established and Board approved new standards for TSC Clinic and Centers of Excellence; 200 child neurologists participated in the Harmful and Disruptive Behaviors CME Symposium at CNS, developed by the Child Neurology Foundation with the TSC Alliance as lead advocacy partner and assisting in curriculum development; secured funding for a CME with 2,151 participants; 60% TSC designated clinics see individuals of all ages.

* Support and empower constituents: 8,742 peer to peer support contacts in 2021; 349 total new volunteers added to Support Services program; 511 volunteer training hours 2021; 55 school meetings in 2021; built and maintained working partnership with 17 national organizations/collaborations; 1,642 attended virtual meetings in 2021 with 6, 636 view of the recordings afterward. 100% of new March on Capitol Hill attendees took TSC Academy in preparation for advocacy on Capitol Hill. Maintained 6 global partnerships with 1 new global TSC Clinic, bringing the total 10.

*Educate and mobilize to increase investment: raised $8,212,256 for research ; Endowment Fund assets $6,711,748 as of 12/31/21; $2,421,439 net was raised through special events in 2019, $1,227,362 in 2020, $1,143,605 in 2021; 7,519 individuals donated online to crowdfunded events in 2021; in 2020 garnered 809 million impressions in 2021; marketing/communications presented findings/recommendations early 2020 and organization moved forward with planning and decisions for name change/rebranding in 2021, formally beginning May 15.

• Build and sustain organization: 4-star CN rating, BBB Giving accreditation, Platinum Guidestar status in 2021; exp ratios 79.17% program/20.83% admin and fundraising for FY21; 0.05% dupes remain in constituent database; staff attended 37 professional conferences in 2021; added 6 new board members; hired a new CFO and Executive Assistant to support the CEO. Science and Medical Team to 6 FTEs.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    The TS Alliance serves all those impacted by tuberous sclerosis complex, children, adults, family and caregivers and other relatives, healthcare providers, educators and researchers serving our community.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    We have included more digital platforms to accommodate how our community likes to receive information. We changed our volunteer leadership summit by allowing our community leadership to design the agenda, provide peer training and help plan roundtable discussions. We add a new goal to our strategic plan on improving access and quality care based on hearing form our community that there was inconsistent quality among TSC Clinics across the US.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners, Openly on our website,

  • How has asking for feedback from the people you serve changed your relationship?

    We adapt programs based on their feedback, we generate resources and it impacts the goals and key indicators of our strategic plan.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

National Tuberous Sclerosis Association Inc
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Operations

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

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

National Tuberous Sclerosis Association Inc

Board of directors
as of 11/07/2022
SOURCE: Self-reported by organization
Board chair

Peter Crino, MD, PhD

University of Maryland Medical Center

Term: 2021 - 2022

Sara Chieffo

League of Conservation Voters

Margaret Cox

CPA

David Coit

North Atlantic Capital Corp.

Rob Grandia

Dana Holinka

P.A.S.C.O.

Julie Blum

Hollingsworth LLP

Matt Bolger

Michigan State Police

Mark Carroll

Amazon

Peter Crino, MD, PhD

University of Maryland School of Medicine

Andrew Duffy

Mercer

Steven Goldstein, CPA

StructureTech New York Inc.

Bill Joseph

Darcy Krueger, MD, PhD

Cincinatti Children’s Hospital Medical Center

Heather Lens

Erin Catron and Company

Laura Marks

Women for Afghan Women

Diane McSwain

Bcureful

Mustafa Sahin, MD, PhD

Boston Children’s Hospital

Sean Shillinger

Frederick Memorial Hospital

Vanessa Vazquez

State of FL, Florida International University

Paul Waxlax

Tara Zimmerman

Community Services Agency

Derek Bauer

University of VA

Chip Burkhalter

Shield AI

Lisa Carlton

REGENXBIO

Julian Gangolli

Tanjala Gipson, MD

University of TN Health Sciences Center

Lesley Holmes, JD

Norton Rose Fulbright

Jessica Krefting, RN

University of Alabama Birmingham

Patroski Lawson

KPMG Group DC

Kristi Lengyel

UCB

Brittany Smith

ShipBob

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and 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 and 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 11/7/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 07/09/2020

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.