PLATINUM2023

TURNER SYNDROME FOUNDATION INC

Turner Syndrome affects 1 in 2000 girls. We can help!

Holmdel, NJ   |  www.TurnerSyndromeFoundation.org

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Mission

The goal of the Turner Syndrome Foundation is to support research initiatives and develop educational programs to increase professional awareness and enhance medical care of those who survive Turner Syndrome. Early diagnosis and comprehensive treatments over the lifespan will lead to a brighter and healthier future for all young girls and women. Our philosophy to keep life-changing resources free and accessible to patients is a key component of what sets us apart. We do not require membership dues or fees to access information and support.

Notes from the nonprofit

Every 8 minutes a baby with Turner syndrome is born, and tragically only 1% of the babies will survive. Survivors are 1 in 2,000 females, which represents the high incidence of TS. Most importantly, survivors require a lifetime of specialized medical care, and they likely will have learning, emotional and social disparities that would be improved if there were a greater understanding and support for their needs. As an advocacy organization we are limited by the charitable funding we receive, and with greater support we can continue to grow the mission to make greater strides for the cause and the people we serve.

Ruling year info

2010

Director and Founding President

Mrs. Laura Fasciano

Main address

P. O. Box 726

Holmdel, NJ 07733 USA

Show more contact info

EIN

27-1409942

NTEE code info

Alliance/Advocacy Organizations (G01)

Alliance/Advocacy Organizations (A01)

Women's Rights (R24)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Turner Syndrome affects every 1 in 2,000 females. That's more than two million women and girls worldwide! This number actually may be even higher since many go undiagnosed or are diagnosed late. The average diagnosis age remains at 15.5 years old. This is an issue because, depending on the case, care can begin as early as birth. Fewer than 30% are diagnosed before puberty, meaning 70% are diagnosed too late for timely medical interventions and effective treatments. Unfortunately, inadequate care continues throughout a Turners girl's life. In adolescence there are minimal resources available to her or her caregivers about the necessary steps to take as she transitions into adult care. As adults, Turners women are not managing their condition effectively. Only 3% of adult women with Turner Syndrome are adhering to the clinical care guidelines outlined by the National Institute of Health. Similarly, these women are unable to find local support groups or caregivers specializing in TS care.

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?

Patient Education Workshops & Webinars

The purpose of patient workshops is to provide education, information, and support to patients and their caregivers through experienced and knowledgeable providers. Turner Syndrome Foundation workshops have been organized since 2009, and reach patients in communities where they live. Many families travel a great distance to increase their understanding, gain new perspectives and learn about current resources. In 2019, these workshops have expanded to an online platform to create learning modules available freely for on-demand viewing, in order to provide the world access to expert presentations serving the greatest number of people. WE Learn webinars is a Turner Syndrome Foundation education initiative made possible through the experts that share their compassion and wealth of knowledge with the patient community. Learn more: https://turnersyndromefoundation.org/living/resources/turner-syndrome-webinars/

Population(s) Served
Women and girls
Family relationships

Every day awareness is garnered through the digital footprint of our website and the culmination of a yearlong of work is celebrated in the shortest month of the year every February. During this month we disseminate information about the condition, engage our community, and call all members of society to action! Everyone is challenged to do something to raise awareness of Turner syndrome in February and every day!

Turner Syndrome is a disorder, the #1 chromosomal abnormality in females, with a prevalence of 1 in every 2,000 live female births. It remains relatively unknown, and many girls live undiagnosed for far too long without appropriate medical care for early screenings and treatment for growth and reproductive health, and evaluations for potential learning disabilities. Those living with Turner Syndrome require a lifetime of specialized care and support. Awareness Month is a mechanism set in motion to improve societal perception and support for this complex condition.

Population(s) Served
Women and girls

The goal and mission of the TS research group is to promote clinical and basic science research in order to increase understanding of the biology of TS through committee collaboration. The committee recruits and identifies new collaborations and targets specific funding opportunities for research focused on TS. The committee encourages the pursuit of innovative research questions to understand the complex biology underlying TS and to create new treatment options for girls and women with TS. Through group discussions, the committee grows and shares a deep appreciation for the complexity and uniqueness of TS biology.

Turner Syndrome Research eXchange (TSRX), a global patient-centered research registry with the goal of informing TS research through patient-submitted medical data. www.TSRX.us

The Turner Syndrome Council on Cardiology (COC) is a team of esteemed medical professionals from various backgrounds dedicated to improving cardiac care for TS women and girls to save lives.

Population(s) Served
Women and girls

The TS Retreat is an annual opportunity for women and girls who have Turner Syndrome to come together. Many of those who have TS never meet someone else who has the same condition as them, and it makes a world of difference for this community to come together and know that they are not alone. Attendees participate in a variety of fun outdoor activities, as well as educational health and wellness workshops. Each year we strive to enhance the program and improve affordability to increase the number of women and girls who can benefit from the program. Due to COVID19 this program has been modified to be a day trip in 2022 and 2023 and offered freely to TS patients.

Population(s) Served
Women and girls

Star Sisters is a hybrid group for mentorship and social outreach through which women and girls who have TS, as well as caregivers, can find support. The participants are invited to a private online group where they can share their stories, ask questions, and learn from others. The connections formed within the group are powerful, and help those affected by Turner Syndrome navigate life’s journey. Within the group, there is a monthly “Virtual Meetup” in which members can come together for a group video chat. Our volunteer facilitators moderate discussions about common challenges associated with TS so individuals may meet safely in the comfort of their homes to share, comfort, and connect with other people who share the same concerns and issues, as well as be socially connected.

Population(s) Served
Women and girls

Where we work

Affiliations & memberships

Association of Fundraising Professionals - Member 2023

Great Nonprofits 2022

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 chronically ill patients served

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

Women and girls

Type of Metric

Other - describing something else

Direction of Success

Holding steady

Context Notes

Based on US Population data and the 1 in 2,000 females living with Turner Syndrome, the incidence of Turner Syndrome in America is approximately 80,000. This does not account stillborn babies.

Number of unique website visitors

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

Women and girls

Related Program

February & Everyday Awareness

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

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 affects every 1 in 2,000 females. Unfortunately, average diagnosis age continues to be 15.5 years old when medical interventions are no longer effective. Similarly, only 3% of adult women with TS are adhering to clinical care guidelines.

The Turner Syndrome Foundation, through the support of research initiatives and the development of groundbreaking educational and awareness programs, is dedicated to increasing professional progress in order to enhance access to appropriate medical care and providing support to those living with Turner Syndrome. Early diagnosis, comprehensive treatment and lifelong education assist in navigating related physical, cognitive, emotional and social issues for TS girls and women at every stage of life. Establishing specialized centers of care and ongoing patient education workshops is necessary to building a foundation of good health and quality of life. Teachers, administrators and school nurses are responsible for children of all abilities. A greater awareness and knowledge of Turner Syndrome can greatly help shape a child's self-esteem and ability to live an independent life with hope and possibilities. Families receiving ongoing support benefit from continued education and resources to wrangle this complex and often misunderstood syndrome. In short, TSF is aiming to improve the professional care needed for every facet of this complex disorder.

Turner Syndrome Foundation, in conjunction with its actively committed board of trustees, medical advisory board and team of volunteers, Professional Members, professional societies, and university and hospital collaborations, works collectively to broaden the common knowledge and elicit support from key stakeholders to transform the life experience for people affected by this disorder. Pervasive in all of society, a community of support can greatly impact the life experience for those who are affected. Strategies include:

• Programs: Awareness, Advocacy, Education and Research
• Complimentary access to a well-maintained information website, turnersyndromefoundation.org
• Awareness - Improve a child’s health, development and well-being through an early diagnosis throughout her life’s journey
• Legislative Advocacy – Public outcry to support legislation that affirms and protects the rights of people affected by Turner Syndrome; patients, guardians and caregivers
• Education - Improve quality care practices through enhanced and ongoing professional and caregiver education and patient education programs through hospitals, clinics, agencies, schools, early learning interventions. Virtual access to informative webinars and meetups
In addition:
• Professional Membership of health care providers who treat TS patients, contributing information and resources
• Research – Support research initiatives such as the TSRX.US, a collaborative global patient owned databank. Patient registry support, communication, data to reflect quality of life issues and unmet needs
• Creating resources and solutions for unmet needs
• Advocate on important matters such as health, education, access to care, insurance, and women's rights, to ensure bright and healthy outcomes.
• Community awareness & outreach through social media
• The Star Sisters mentorship group
• The annual Autumn Retreat

Since its inception in 2008 and later incorporation in 2009, the Turner Syndrome Foundation has exemplified itself as a key stakeholder and visionary creating the first ever patient registry, patient education workshops, groundbreaking continuing medical education for allied health professionals on Medscape, educational tools and videos, awareness and education outreach programs, research initiatives, speaking on ground rounds at hospitals, exhibiting at regional and national professional society conferences, and so much more. The appeal for this mission is realized through a broad base of dedicated volunteers from across the country. Turner Syndrome Foundation is a lean organization that utilizes power of volunteers, its website, and technology to be far reaching.

TSF is recognized as a world leader for its contributions to a host of issues related to TSF programs. The greatest accomplishments of the organization to date would be the education and advocacy resources developed that reach thousands of physicians and allied health professionals, teachers, policy makers, patients and caregivers; especially the Council on Infertility organized to tackle reproductive health, which published “Fertility Preservation In Females With Turner Syndrome: A Comprehensive Review and Practical Guidelines." We have been successful in raising awareness within professionals and families, but we must forge stronger collaborations with hospital networks and professional medical societies to translate information to actionable support networks. Our goal is to align our mission with that of women's health care centers, hospitals and community clinics to provide access to helpful information and support where and when it is needed most. With over 80,000 women living with TS in the United States, our mission will not be fulfilled until the high average diagnosis age is reduced and lifelong care is easily accessible.

The organization of the annual Turner Syndrome Autumn Retreat is also a main accomplishment of TSF. It is a unique opportunity for those affected by TS to join together to form bonds and learn about their condition. Each year we strive to expand upon the program and make it more affordable so every woman and girl will have the opportunity to attend. The annual Turner Syndrome Autumn Retreat accommodates individuals and families to gather in nature to offer recreational and craft activities of a traditional camping program. Individuals and families living with Turner Syndrome spend a good deal of their lives in doctor's offices. The TSF Autumn Retreat provides a range of activities, including the freedom to play, learn and have fun with others who encounter similar difficulties. The psychological, recreational and physical benefits of the retreat can ease the oneness of their journey. Communicating and sharing feelings with others who really know what it's like to live with someone with a chronic health condition or disability helps these children and their families understand they are not alone.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • 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, To understand people's needs and how we can help them achieve their goals

  • 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 demographics (e.g., race, age, gender, etc.), 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 share the feedback we received with the people we serve, 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

TURNER SYNDROME FOUNDATION 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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  • 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 FOUNDATION INC

Board of directors
as of 08/02/2023
SOURCE: Self-reported by organization
Board co-chair

Laura Fasciano

Turner Syndrome Foundation, Inc.

Term: 2009 - 2025


Board co-chair

Lorraine Kobular

Turner Syndrome Foundation Inc.

Term: 2018 - 2025

Suzanne Bousquet

Kean University

Dawn Petr

Doreen Sullivan

Danielle Moore

Laura Fasciano

Lorraine Kobular

Janis Elwell

Kayla M. Ganger

Family Practice Center PC

Mary Gwyn Roper

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 ? Not applicable
  • 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 8/2/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

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

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 08/02/2023

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • 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 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.