Turner Syndrome Foundation
As part of Turner Syndrome (TS) Awareness Month in February, Turner Syndrome Foundation (TSF) volunteer and ethnographic researcher Audrey (AJ) Jones and a team of butterflies put together a live performance on Facebook called “The Butterfly Effect.” Read below for more on how this project came about and to see a recording of the performance.
The only thing more powerful than a single butterfly is a whole kaleidoscope of them.
AJ's TS Journey
When I think back over my experience researching TS for the past six years, I can’t help but feel like my journey has been a prime example of the butterfly effect. The theory suggests that a single flap of a butterfly’s wings changes the air around it, building until finally, weeks later, a storm is born. In other words, even the smallest action, made by the smallest butterfly, can profoundly alter the course of history.
My Introduction to TS
I first learned about TS while sitting in a genetics lecture in college. My professor changed his PowerPoint slide, bringing up a photograph of a young girl with TS. As he sped through the basics of the condition, my mind swam with questions: How had I never heard of this condition, which impacts one in every 2,000 live female births? How did short stature, delayed or incomplete pubertal development, and infertility impact those with the condition, especially young girls?
And, most importantly, what did the 1-2% of those who made it to birth have to say about their experiences? Before I could process what I was learning, my professor changed the slide and continued his lecture.
My Research
But TS stuck with me. Inspired by the questions I had, I wrote my junior research paper on the condition. The following year, I had the life-changing opportunity to volunteer with TSF, during which time I interviewed dozens of individuals with the condition for my undergraduate thesis. Learning more each day from the amazing people I spoke with, I applied to Emory University’s anthropology PhD program to continue my studies on TS. Now, years later, I am finishing my ethnographic dissertation research on the everyday experiences of individuals with the condition.
Note: Ethnography is the scientific description of peoples and cultures with their customs, habits, and mutual differences.
A Lasting Impact
Had I missed that lecture or been distracted during the few minutes my professor talked about TS, I may never have started my journey researching the condition, and I certainly wouldn’t be where I am today. That single PowerPoint, a butterfly in its own way, created a ripple that has grown and created the unforgettable and insightful experiences I’ve had with butterflies all over the country.
"The Butterfly Effect" Project
It’s more than fitting, then, that I recently worked with a group of six butterflies to create a short, original play called “The Butterfly Effect.” Soon after beginning my research at Emory, I knew I wanted to incorporate something more collaborative and creative into my research, with the hope that it might contribute to TS awareness more than an academic article ever could.
With the help of doctors and nonprofits recruiting for my study, including TSF, I was lucky enough to find six incredible volunteers with various levels of theater experience who were generous enough to share their experiences–good and bad–with one another during our rehearsals.
Meeting on Zoom nearly every Saturday from late October to mid-February, I led the group in exploring various themes that related to TS–including generational differences, family and nonprofit support, education and puberty, infertility and motherhood, and disability and healthcare–through theatrical games and skits. The past few weeks, we’ve been brainstorming ideas for a performance to share with the community based on our discoveries during the previous weeks of exploratory rehearsals.
Together, the seven of us dreamt up “The Butterfly Effect.” The play emphasizes the diversity of TS experiences, while exploring how butterflies have impacted one another–and the world–
throughout history. Our cast envisioned a shared goal for the play: we hope the performance will be uplifting and provide “a glimmer of hope,” reminding us of how far TS research has come in the past few decades, and how much more we need to–and will–accomplish.
A virtual performance of “The Butterfly Effect” streamed live on TSF’s Facebook page in late February. The performance remains available for viewing on Facebook and is posted with captions on AJ’s YouTube channel.
Final Thoughts
I’m incredibly grateful that my research can help spread awareness about TS and that TSF has continued to offer unwavering support for my theatrical endeavors. Over these past six years, I’ve volunteered for the Foundation, hosted events for the community, and collaborated with butterflies to educate the larger population about TS. When I first learned about the
condition all those years ago, I couldn’t have imagined the research and activism I’d be involved in today, or that I’d be lucky enough to have these passions be integrated into the same, larger mission.
The only thing more powerful than a single butterfly is a whole kaleidoscope of them. With every flap of a wing, they build momentum to change the lives of other butterflies for the better. Without older generations of butterflies, today’s butterflies may not have had access to human growth hormone (HGH) or hormone replacement therapy (HRT), or even have a name for the diagnosis.
Who knows what big changes future generations will bring about? All I know for certain is that every butterfly I’ve met has created an effect that’s made a lasting impact on my life and the lives of everyone else they meet. So the only question that remains is: how can you flap your wings and change the world?
How You Can Help the TS Community
There are nearly endless ways to support the TS community and create your own “butterfly effect.” You can donate to TSF or consider organizing a fundraiser of your own. You can create your own kaleidoscope with recurring donations. Or volunteer your time instead. Whether you’re an individual, group, professional, or business, you can make a lasting and positive impact on the lives of butterflies. And there’s nothing more powerful than the chance to share your experience with TS. TSF’s blog is full of stories from those with the condition, their family members, and other researchers that will remind you of the powerful force of a butterfly, no matter how small.
Important Links
Written by Audrey (AJ) Jones, an ethnographic researcher, and edited by Susan Herman, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2022
