A Message from the Director and Founding President about the Vision for the Turner Syndrome Foundation.
Before the diagnosis of my youngest daughter, I had never heard of Turner Syndrome or of its impact on women’s health. To this day the absence of information in clinical settings 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 made, and a syndrome spoken. Our hearts broke, we cried, but 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 either to go on as usual or become proactive. I chose the latter.
Fostering awareness, creating new education programs, and supporting research initiatives soon became the objectives of the Foundation. Thought leaders, investigators, and clinicians were encouraged to share their knowledge. Individuals and caregivers were invited to join the TSF PATIENT REGISTRY and to become activists themselves. Overtime, TSF became an advocacy trailblazer raising all expectations with fresh ideas and collaborative relationships. As this mission continues to advance each and every day, the need for new energy, leadership, and support is greater than ever.
If I may, I would like to have you ask yourself this personal question, “Do I believe in the power of one?”
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.
I am honored to steward this mission because of my daughter and pleased to share that she is an amazing young lady. We have learned that blessings sometimes arrive by way of adversity and with a leap of faith and determination they become our strength. Turner Syndrome, when survivable, is a treatable condition. We have experienced firsthand the challenges and growth derived from angst of an unforeseen diagnosis. We would never have chosen TS for our daughter, but somehow it chose her.
If women’s health and this cause are important to you, and you have ideas and means to support this advocacy in service or influence, we want to hear from you.
Director and Founding President
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