In August, the Turner Syndrome Foundation (TSF) launched the “Butterflies Around the World” campaign and created a beautiful Turner Syndrome (TS) kaleidoscope. During its lifetime, and with a difficult beginning, the butterfly is able to accomplish things other beings cannot, much like TS butterflies. In the end, a caterpillar becomes a beautiful, graceful entity. As TS awareness continues to grow, so does the idea that TS butterflies will continue to beat the odds. This event was a beautiful, fun, and creative way to spread awareness about TS and TSF. Although the butterfly project has reached its end, we encourage you to continue spreading your wings and TS awareness.
See the Kaleidoscope
First, let’s begin by sharing some fun photos of your butterflies. Below you will find some creative photos from all over the world from volunteers, families, friends, and those affected by TS. We hope that our Butterflies Around the World event sparked some very important conversations about TS.
Gaby, TSF’s new volunteer TikTok guru, demonstrated how she decorated her butterfly in a TikTok video. Double click on the video below to see it in full screen.
Julie is a joyful, vibrant woman with TS whose mom, Lori, is a key TSF volunteer and advocate for parents/caregivers. Scroll through the photos below to see Julie’s adventures with her butterfly! Hover over each image to see a description.
Kayla, TSF’s Professional Membership Liaison, traveled across Europe with her butterfly! Kayla, who is a Physician Assistant-certified (PA-C), is helping to grow TSF’s professional membership program and increase TS awareness and advocacy amongst other medical professionals.
Here are Leah and her butterfly taking on her first day at the College of William and Mary in Virginia. Leah is studying biology and genetics so she can help other girls with TS like herself!
Michelle was diagnosed at birth and had a very difficult childhood, surviving multiple incidences of abuse. Despite everything, she went to college and graduated with an Associate’s Degree in early childhood education. Her dream job is to be a kindergarten teacher. She got help from her doctors and is doing so much better. Michelle wants everyone with TS not to give up and would like to remind you that “you can do this!”
Nicole is another key TSF volunteer, serving on the Awareness Committee and as one of the Star Sisters group organizers. Here are Nicole and her butterfly enjoying the fun and sun at the TSF Liberty Lake picnic.
Susan, TSF’s Blog Coordinator, named her butterfly Mariposa (butterfly in Spanish). She loves paper crafts and posted her blinged-out butterfly below as an example at the beginning of the event. Due to a recent injury, Susan was unable to travel, but her cats did hang out with Mariposa (#unimpressed #catsforTSawareness). Hover over each image to see a description.
More than Just Crafts
Every month, TSF tries to offer a unique way of spreading awareness or fundraising. So far, TSF has hosted bake sales, fundraising campaigns, crafts, and opportunities to host your own special events. The importance of these campaigns is to help others understand that you do not have to host a traditional event with just brochures and information. You can make it fun and inclusive and make the event something you love doing, such as a hobby or craft. There are many ways to raise awareness that are fun for you and the community. This creates a domino effect–a gift that keeps on giving. What are some ideas you have in mind? We’d love to hear them!
TS is the most common sex chromosomal disorder–number one among female births. The condition affects one in every 2,000 live female births. One thousand baby girls are born with TS annually (one every eight hours). Only one to two percent of fetuses with the condition survive to birth. By spreading awareness, you are literally changing lives. When you plan an event to help raise awareness, you are shining a light on an important cause. Your support helps TS’s mission of promoting awareness, advocacy, education, and research.
As we continue to grow, we encourage you to keep checking out our blog and learning. Knowledge is power. We hope you enjoyed our TS kaleidoscope. Until next time, keep spreading your light and your butterfly wings!
Written by Janae Bunn, TSF volunteer blog writer, and edited by Susan Herman, TSF Blog Coordinator. Designed by Jasmine Persaud, TSF volunteer blog designer.
© Turner Syndrome Foundation, 2022