Turner Syndrome Support of St Louis Foundation

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. We have had various social events which include Pizza Restaurant gathering, The Muny, The Zoo, and Grants Farm.