A Message from the Director and Founding President
Before the diagnosis of my youngest daughter, I had never heard of Turner Syndrome or its impact on women’s health. To this day the absence of information in clinical settings further illuminate the vulnerability of girls and women who often go undiagnosed for years, or even decades.
At seven, my daughter was screened and diagnosed with TS because of the hallmark symptom, significant short stature. The phone rang, an appointment scheduled, and a syndrome spoken. Our hearts broke, we cried, but we put on a happy face determined to keep our daughter healthy and happy. That was all we could do. Looking back on those early days following the diagnosis, we embellished our daughter with affection. We were unwavering in our love and support for her, but in our time of need as caregivers we were alone.
Back then, the available information was clinical and pointed to the many possible defects, secondary diseases, cognitive, and emotional issues of this disorder. It became clear the journey would become more complex in adolescence and adulthood. I stood at a cornerstone as her mother to either accept a certain fate and go on as usual, or to become proactive. I chose the latter.
Fostering awareness, creating new education programs, and supporting research initiatives soon became the mission objectives of the what has become hallmark programs of the Turner Syndrome Foundation. Thought leaders, clinical investigators, and healthcare providers were encouraged to share their knowledge, and they continue to do so this very day. Adult women and caregivers to children with Turner syndrome are invited to join the TSF PATIENT REGISTRY and to become activists themselves, and thousands have! Over a period of time, TSF has become a trailblazer for advocacy raising all expectations with innovative programs and collaborative relationships. As this mission continues to advance each and every year, the need for new energy, leadership, and philanthropic support becomes even more crucial to this mission, our cause, and the multitude of people of all backgrounds from all nations from around the world who seek information, understanding specialized care and support.
“Never doubt that a small group of thoughtful, committed citizenscan change the world;
indeed, it’s the only thing that ever has”. – Margaret Mead
I urge you to imagine what you can do as an ambassador of the Turner Syndrome Foundation. Imagine how you will feel and the legacy you will leave behind when you influence optimism in the lives of girls and women affected by Turner Syndrome in our communities and around the globe. Lives will be saved and changed forever.
I am humbled to steward this mission on behalf of all of the babies born with only a 1% survival rate who fight to become the living among us. How precious life can be!
Turner Syndrome, when survivable, is a treatable condition, and there is hope for her future. No matter if a baby with Turner syndrome survives birth or not, she is with us forever and she is the greatest joy.
If women’s health and this cause seem important, they are now more than ever! Should you have the means to support this advocacy with philanthropic influence and service, I urge you to contact us.
Director and Founding President
The Foundation relies greatly on volunteers for its governance and programmatic activities. Meet the host of individuals that dedicate their expertise, talent and time to this cause. Who We Are