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Turner Syndrome Society
of the United States (TSSUS)

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2023 Annual Membership Meeting Presentation

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.

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

History of the Butterfly as a Symbol for Turner Syndrome

 

Today, the butterfly is recognized around the world as the symbol for Turner syndrome. We even refer to ourselves as butterflies, butterfly sisters, and golden butterflies. Many people ask how this came to be.

In 2010, the Turner Syndrome Society of the United States decided to update the organization’s logo. The previous logo featured four connected circles representing the connections between those with TS the Society supported. One of the things we often heard from the community was that the logo looked like a butterfly.

The four circles of the former logo have evolved into the wings of the iconic butterfly of the Turner Syndrome Society of the United States logo known around the world you see today. This evolution connects our past to our present. The butterfly is feminine yet strong like our members. Butterflies fly on their own, which is what we hope all of those with Turner syndrome will do with TSSUS forever providing support.

The Turner Syndrome Society of the United States is proud to have created the connection between the butterfly and Turner syndrome so well known today.

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Financials

All nonprofit charities are required to make their financials available to the public, either online or by request. We value being transparent with our community and welcome any questions.

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