Legislative Advocacy in PA

One of the greatest joys of work at the Turner Syndrome Foundation is hearing stories of people getting involved across the nation to make a difference. On February 5, a wonderful Turner Syndrome parent and advocate, Dana, and her daughter, Carly Joy, went before the Pennsylvania State Senate on behalf of Turner Syndrome Awareness Month. Dana has successfully advocated for February as awareness month for six years in a row, and her story can inspire us all to work to achieve the same goal in every state, and on a national level.


Image-5“What an emotional and amazing day it was. Since the day Carly Joy was born, she has been my hero and inspiration. I truly am the mom and person I am because of my journey through life with her. She has encountered more obstacles in her short life than most adults do in their life time. At times, I question how it’s even fair or possible. Yesterday was a special day. Carly Joy was introduced on the State Senate Capitol Floor, in Harrisburg, as a miracle, survivor & inspiration followed by a standing ovation! Then, Senator John Blake talked about Turner Syndrome, he provided the legislatures with information I have given to him for 6 years now. He tells them about the statistics, possible health issues, and how there isn’t enough funding and research, for not only TS but nonverbal learning disorder (NVLD), and infertility issues. When he was done speaking I thought to myself, WOW, that’s my BABY, (now 10) they’re talking about!

Image-3As amazing as that was, the defining moment was to follow. Senator John Blake introduced me to a gentleman on the Senate floor who heard of Turner Syndrome before. Unfortunately, he was aware of it, because he and his wife lost their baby girl in utero to Turner Syndrome. At that moment, he took the time to thank me for my efforts in spreading awareness, especially positive awareness, regarding Turner Syndrome to state legislatures. He went on to tell me how scared he and his wife were, that Drs and medical professionals had little to no knowledge of Turner Syndrome, when they searched the internet they became overwhelmed. He then went to compliment Carly Joy and talk to her. It was then I hugged her as we walked away and thanked God for this crazy journey. Yes, we have cried many, many tears, and we may not always understand why, but in the end she is my MIRACLE. She’s beat the 2% odds and no matter what, as long as we have eachother, our love and faith we CAN and WILL conquer anything! And I will continue to advocate and spread awareness with the help of our legislators, especially Senator Blake!

I’d like to add this is the 6th year I have, with the help of Senator Blake and other congressional leaders, had February Proclaimed Turner Syndrome Awareness Month here in Pennsylvania! That took many hours of writing letters, being a constant pain in the butt, emailing and calling local offices. I was determined to get someone to hear our story, meet my miracle and inspiration. I needed to fight for her and ALL the families who our on this journey, because we are in this together. NO ONE should be alone or scared.”

We hope that Dana and Carly Joy’s story can inspire us all to make a difference for Turner Syndrome. If you are not sure where to start with legislative advocacy, email advocacy@tsfusa.org to request materials that will help you get started. If Dana and Carly Joy can achieve so much on their own, just think fo what we could all accomplish, together!

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