Turner Syndrome Support of St Louis Foundation

Chesterfield, MO   |  https://tss-stl.org/

Mission

Turner Syndrome Support of St. Louis creates awareness, promotes the Turner Syndrome Clinics in St. Louis, encourages building relationships among peers, ​presents opportunities for parents to connect, ​and provides information and support to anyone affected ​​by Turner Syndrome in the St. Louis and surrounding areas​.

Ruling year info

2020

Principal Officer

Cheryl Jost

Main address

13321 N Outer Forty Rd Ste 100

Chesterfield, MO 63017 USA

Show more contact info

EIN

84-3299309

NTEE code info

Specifically Named Diseases (G80)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

It is a chromosomal condition that exclusively affects 1 in 2000 girls and occurs when one of the two X chromosomes normally found in females is missing or incomplete. A simple blood test, called a karyotype, will check for the absence of all or part of one X chromosome. Under-diagnosis and delayed diagnosis of TS is a real problem, with the average age of diagnosis at 15 years, arriving too late for life-altering treatments, early interventions, and most importantly health screenings for a potentially fatal heart defect. The main goal of awareness is to reduce the age of a girl being diagnosed with TS from middle school age to early elementary school age. Some of the possible indicators of TS are: short stature (average height untreated 4’8”), frequent ear infections, delayed puberty, wide short neck, small jaw, triangular face, many moles, puffy hands and feet, high arched palate, verbally gifted, low set ears and hairline, lazy eye, broad chest, drooping eyes, dental problems, upt

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?

Turner Syndrome Support

Turner Syndrome Support of St. Louis creates awareness, promotes the Turner Syndrome Clinics in St. Louis, encourages building relationships among peers, ​presents opportunities for parents to connect, ​and provides information and support to anyone affected ​​by Turner Syndrome in the St. Louis and surrounding areas​.

Population(s) Served
Adults
Children and youth
Family relationships
Health

Where we work

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 attendees present at rallies/events

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Average number of people attending each event.

Number of books distributed

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

Number of educational TS books given away annually.

Number of public events held to further mission

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of donors retained

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Number of donors outside of our Variety Show Fundraiser.

Number of broadcast audience members

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Number of email subscribers.

Number of volunteers

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Number of outreach attempts to reporters

This metric is no longer tracked.
Totals By Year
Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of academic scholarships awarded

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

Number of people we send to the Turner Syndrome Society of the United States (TSSUS) National Convention.

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.

Turner Syndrome Support of St. Louis creates awareness, promotes the Turner Syndrome Clinics in St. Louis, encourages building relationships among peers, ​presents opportunities for parents to connect, ​and provides information and support to anyone affected ​​by Turner Syndrome in the St. Louis and surrounding areas​.

Turner Syndrome Support of St. Louis creates awareness via social media and our website. The support group has volunteers in our local Turner Syndrome Clinics during the Meet and Greet, connecting girls with TS and parents. Through our Butterfly Phone Line we are connecting newly diagnosed families with volunteers in our support group who have experience with TS. Our support group encourages building relationships by providing a variety of social events of interest, and a Young Adult Butterfly Group for girls who have graduated from High School to connect. The support group provides free printed and digital content to anyone seeking information about Turner Syndrome, and we provide links to various national Turner Syndrome support groups.

Turner Syndrome Support has a website and Facebook page to promote awareness and information. Members of our support group volunteer in the local Turner Syndrome Clinics, which we have a close connection to and work directly with the directors and physicians in the clinics. Our support group organizes several various social gatherings throughout the year for TS girls and parents to connect. We have created a Butterfly Phone Line form on our website to connect newly diagnosed families with volunteers in our support group who have experience with TS. Our support group uses donations to purchase printed materials to give anyone seeking information about Turner Syndrome.

Turner Syndrome Support of St. Louis holds an Annual Spring Picnic to help build relationships. The support group has had events in the past such as a Genetic of Turner Syndrome Presentation. The group is in contact with a horse with Turner Syndrome, which we make visits to see. Our support group has developed a Young Adult Butterfly Group for girls who have graduated high school to connect with socially. Our support group works closely with the local Turner Syndrome clinics, and has developed a Butterfly Phone Line, which is a way for newly diagnosed families of Turner Syndrome to have someone to call and ask questions to. Our members volunteer in the local Turner Syndrome clinics during the Meet and Greet by connecting parents and providing craft activities for TS girls to connect and bond. We have hosted a webinar informing people about the Coronavirus and Turner Syndrome with an open Q&A session.

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.
  • 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), Suggestion box/email,

  • 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 strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    We received feedback that our members would like to learn more about how the Coronavirus affects people with Turner Syndrome. Therefore, we held a webinar with an Infectious Disease Coordinator who explained how COVID-19 affects people with Turner Syndrome, with time at the end for participants to engage in a Q&A session.

  • With whom is the organization sharing feedback?

    The people we serve, Our board,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

Turner Syndrome Support of St Louis Foundation
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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
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Turner Syndrome Support of St Louis Foundation

Board of directors
as of 2/26/2021
SOURCE: Self-reported by organization
Board chair

Cheryl Jost

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 02/13/2021

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
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

No data

Equity strategies

Last updated: 02/13/2021

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. 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 analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • 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 disaggregate data by demographics, including race, in every policy and program measured.
  • 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • 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 measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.