by Katie Steedly Curling, PhD, Writer & Guest Blogger for TSF

Sometimes in our rush to think about awareness as big events and campaigns, we forget that awareness is, above all, personal.

Connection is the heart of Turner Syndrome awareness. Communication is the heart of connection. Talking and writing are the heart of communication. Awareness begins with talking and writing.

Talking Turner Syndrome

I am new to talking about Turner Syndrome. I have been writing about it for a few years, but talking about it is a different thing. Building relationships with strangers connected to Turner Syndrome is something I had never done before deciding to host the Butterfly Dinner, an event to bring people living with Turner Syndrome and their families together. I decided to host the Butterfly Dinner as part of Connect Miami, a community-wide initiative that seeks to create relationships and raise awareness across differences. 

A wrestling match of thoughts started the minute I let Connect Miami know about my Butterfly Dinner idea. Do I really want to be vulnerable? Will people even come? Am I ready to come out from behind my computer and actually talk with others face-to-face? Despite this noise in my head, I contacted several Turner Syndrome organizations, reached out to medical professionals who treat women and girls with Turner Syndrome, and joined Turner Syndrome social media groups. Each time, telling my story and connecting with other people was woven into the fabric of nurturing the Butterfly Dinner. 

A Chance to Connect

The day of the event was filled with nerves, joy, and wrangling. There were things to be purchased, rooms to arrange, and plans to be executed. I remembered, while running here and there, that this whole thing (the reaching out, the looking inward, and the stepping forward) was part of something bigger. I thought about the fact that this was just the beginning of an ongoing and important challenge I was accepting. The challenge to connect with others, not just people with Tuner Syndrome, but all people.

The guests arrived and the party started. Conversation flowed amidst openness and kindness. Comfort filled the room. Five people, in addition to my husband and myself, were there. We shared common stories as information wrapped in personal experience made my head nod. We understood each other. The party ended with a group picture and hugs.

Turner Syndrome Awareness through Communication

Communication leads to connection, and connection leads to awareness.   

Hosting the Butterfly Dinner taught me a few things. I learned reaching out doesn’t have to be a huge deal. I learned that connecting from our heart, from wherever we are, through our fears and doubts and excuses, is a true blessing. It is felt inside our muscles and bones, to the very core of our being, and reverberates in our world. That is the heart of connecting, and ultimately of raising awareness. I will continue to reach out and be the person who writes about her Turner Syndrome experience to raise awareness. The one who who invites, who says yes. I will be the door holder, the smiling jogger, and the attentive person at the grocery checkout. There will be a true butterfly effect. Small efforts like the Butterfly Dinner have great impact. Communication leads to connection, and connection leads to awareness.   

Katie is so right that raising awareness starts with a simple conversation! When more people learn about Turner Syndrome, that allows for positive change for this community, leading to improved life outcomes.

You can host a meetup just like Katie did! Whether at your house, a park, or a restaurant, meetups are a way to form personal connections that will make an impact. Schedule your meetup and we will support you along the way!

Hello, Turner Syndrome Foundation community! My name is Kierstyn Holly & I am the Social Media Coordinator here at TSF. I am currently a junior Public Relations major at Monmouth University where I intend to gain knowledge and experience in the fast paced world of Public Relations. Not only do I go to school but I also love watching TV shows, volunteering, hanging out with friends and family, oh and I absolutely LOVE to travel!!

I came to the Turner Syndrome Foundation when I saw they were looking for someone to help out with social media, Perfect!!! I found a job that needs what I intend to do for the rest of my life. Little did I know what an impact this wonderful organization would have on me. Not only do I get to do what I love everyday, but I also get to learn & experience new things. I absolutely love working for an organization that cares about advocating as well as finding ways to help those who live with Turner Syndrome get the help they need to live a healthier life!