Turner Syndrome Society of the United States

Empowering, Educating, Supporting

aka TSSUS   |   Houston, TX   |  www.turnersyndrome.org

Mission

The mission of the Turner Syndrome Society of the United States is to advance knowledge, facilitate research, and provide support for all those touched by Turner syndrome.

Ruling year info

1988

President

Mrs. Cindy Scurlock

Main address

11250 West Road Suite G

Houston, TX 77065 USA

Show more contact info

Formerly known as

Cindy Scurlock

Becky Brown

Deborah Rios

EIN

41-1596910

NTEE code info

h Defects & Genetic Diseases (Dir)

ational Support (Bdu)

Health Support Services (E60)

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

TSSUS will celebrate its 35th anniversary before the current strategic plan end date. Our mission has evolved over time yet the need for a vibrant, positive and supportive TS community is still central to TSSUS. Our vision will one day be fulfilled by creating an empowered an engaged Turner syndrome community. Despite genetic testing advances and minimal TS research, we are far from understanding health and well-being issues that negatively affect the quality of life of those with TS. The TSSUS board and staff commit to the following three- year strategic plan because it is essential to supporting the needs of those diagnosed with TS and those advocating for them. The plan is the result of careful consideration of opportunities and challenges, collaborative relationships, finances and most importantly the needs of those we serve. The four goal areas for 2020-2023 • EMPOWER • COMMUNITY • RESEARCH • INCREASE REVENUE

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?

TSSUS Annual National Turner Syndrome Conference

The TSSUS National Turner Syndrome Conference (the Conference) is an annual educational event. For 34 years, the Turner Syndrome Society of the United States (TSSUS) has held this annual event in rotating major cities across the United States.

The Conference brings together 700-800 people each year who have Turner syndrome (TS), their family members, spouses, and expert physicians and researchers. The Conference serves a diverse group, ranging from small infants to senior adults.

The Confernece is often the first opportunity for a person with TS to meet others with the condition. The social benefits of this experience are described as "life-changing" for many. This is a three-day event, usually in July, and features 30-40 concuttent break-out sessions, 20 expert presenters, and several opportunities for social interaction.

Population(s) Served
Age groups
Ethnic and racial groups
Health

Where we work

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.

The following goals ground and guide TSSUS as we continue to soar toward our shared vision. The objectives direct TSSUS leadership decisions and support annual progress reviews.

EMPOWER
Goal Statement: To provide the most useful and accessible information to individuals and families for Turner syndrome related needs.

Objective 1. Cultivate the TSSUS website to ensure it is the most useful online TS resource.
Objective 2. Successfully communicate information.
Objective 3. Personally help people navigate their TS journey.
Objective 4. Create and expand valuable resources.
Objective 5. Ensure TSSUS has strategic relationships with TS stakeholders and to influence laws, policies, research and education affecting the TS community.

COMMUNITY

Goal Statement: Foster relationships and opportunities to support a culture of encouragement and benefit of one another.

Objective 1. Provide opportunities for people to build relationships with one another in-person.
Objective 2. Provide opportunities for people to socially connect with one another online.
Objective 3. Promote respect, acceptance and caring within TSSUS communications.

RESEARCH
Goal Statement: Maximize Turner syndrome research efforts to generate proven treatments.

Objective 1. Support the Turner Syndrome Research Registry (TSRR) to provide the highest quality source of TS data available to researchers.
Objective 2. Ensure TSRR support services are helpful to TS researchers.

INCREASE REVENUE
Goal Statement: Maximize revenue.

Objective 1. Maintain a financially stable and sustainable operating mode.
Objective 2. Oversee successful stewardship of individual donors.
Objective 3. Identify and prepare requests for foundations and corporate donors when economy is back on track.

Turner syndrome is a complicated and variable condition that presents with an array of life-long medical, social, and emotional challenges. The medical conditions alone require disciplined and informed frequest testing and monitoring throughout a person's lifetime. Social deficites can bring about feelings of isolation and low self-worth/self-esteem. Executive functioning challenges can pose difficulties in the workplace and at home.

Our strategies center around empowering our community to be their own best advocates through access to the latest medical and health information alongside real social opportunities to connect and build lasting friendships and relationships.

Another challenge facing the TS community related to healthcare is a tremndous lack of research. Turner syndrome is not a well-known condition, although it is more prevelant that Down's syndrome. Through our collaborations with expert researches with the Turner SYndrome Research Registry,m the Turner Research Network, and the Scienetific Advisory Board, we are driving Turner syndrome research.

The Turner Syndrome Society of the United States is uniquely positioned in this space as the world leader on the condition. Our organization was created 35 years ago. We have cultivated the largest Turner syndrome database worldwide, have long-standing relationships with the medical and research communities, as well as close personal relationships with members of the Turner syndrome community.

The Turner Syndrome Society of the United States began 35 years ago. We we're an integral part of having growth hormone therapy indicated for Turner syndrome in the mid 1990's. We've created a support network across the country and internationally surrounding TS.

We hold the annual TSSUS National Tyurner Syndrome Confernece each year, and have done so without interuption for 33 years, until 2020 and COVID.

We created the Turner Syndrome Research Registry, which is postiitoned to be the single-most impactful tool for TS research since the syndrome was first named by Dr. Henry Turner in 1938.

We've compiled a database of more than 17,000 people with or aligned with Turner syndrome.

We created a nationwide awareness and fundraising walk program.

Financials

Turner Syndrome Society of the United States
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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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  • Analyze a variety of pre-calculated financial metrics
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Turner Syndrome Society of the United States

Board of directors
as of 3/22/2021
SOURCE: Self-reported by organization
Board co-chair

Mrs. Nancy Bryant

none

Term: 2020 - 2022


Board co-chair

Mrs. Brittani Lasik

Nurse Practicioner

Term: 2019 - 2024

Nancy Bryant

Chair

Brittini Lasik

Chair-Elect

Carolyn Gibbs

Treasurer

Michael Silberbach, MD

Professional Advisory Board Chair

Melissa Caulum

Board Member

Jeff Hynes

Board Member

Erica Melman

Board Member

Kimberly Walker-Pierce

Board Member

Meagan Given

Board Member

Jennifer Steele

Board Member

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 03/22/2021

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