Turner Syndrome Society of the United States (TSSUS)

2021 Annual Membership Meeting Presentation

The Turner Syndrome Society of the United States (TSSUS) is a 501 (c) 3 national non-profit organization serving the important and diverse needs of the Turner syndrome community. The Society was created in 1987 by a group of women in Minnesota for the purpose of networking and support. Today we have over 1,000 members and 100 volunteers supporting our valuable programs. 

 

EIN 41-1596910

Mission Statement

To advance knowledge, facilitate research and support all those touched by Turner syndrome. 

 

Vision Statement

An empowered and engaged Turner syndrome community. 

Each year, the Society becomes a brighter beacon of hope, turning tears and fears into feelings of relief.  TSSUS is the largest organization supporting those with TS in the world and we coordinate efforts with national and international TS organizations, physicians, and researchers.

 

We understand every person’s needs are unique a Turner syndrome affects individuals differently. Education is our foremost goal whether you are a member of our society or a guest, you may access all resources and receive support from parents and individuals who have experience with TS. Membership benefits include special opportunities and discounts.

With an uncompromising effort, TSSUS continues to build upon our mission and achievements through dedicated leadership. Determining what is possible and what is necessary, then carefully balancing the two, allows for the TSSUS legacy to continue.

​TSSUS is proud of the following key accomplishments:

  • Creating and maintaining support groups across the United States

  • Providing education and support through the TSSUS national annual conference, for people with TS and their families

  • Coordinating research study support that led to the FDA approval of Human Growth Hormone (HGH) and estrogen therapy as standard care for TS

  • Coordinating TS researchers and physicians to create the first “Recommendations for Diagnosis and Treatment of Individuals with Turner Syndrome”​

  • Maintaining the Healthy Heart Screening and Study that saves lives while advancing TS heart research

  • Coordinating and funding the 1st Turner Resource Network Professional Symposium​ in 2014 and co-facilitating the 2nd in 2016 and 3rd in 2018

  • Collaborating with the Turner Resource Network to revise the TS Clinical Practice Guidelines and produce a patient version of the guidelines.

  • Developing the Turner Syndrome Research Registry to advance TS research. A collaboration with the TS health and research community.

  • Sustaining a culture of respect, support, and continuous desire to improve the lives of those with TS and those who love them.

 Our 2020- 2023 Goals and Objectives 

EMPOWER 

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

 

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 researcher

 The Butterfly Society is a fundraising initiative allowing committed donors to enable TSSUS to support the TS community.