February is a special time for the Turner syndrome community. Each year during Turner Syndrome Awareness Month (TSAM), families, advocates, and supporters come together to share stories, educate others, and raise awareness about Turner syndrome.
This year, the response from our community was truly inspiring. From classrooms and coffee shops to social media and fundraising efforts, people around the world helped bring Turner syndrome into conversations that might not have happened otherwise.
Together, we raised awareness, built community, and reminded girls and women with Turner syndrome that they are never alone.
TSAM 2026 by the Numbers
Our community’s efforts created incredible visibility and engagement:
- 1.7 million social media impressions across TSF’s Facebook, Instagram, and LinkedIn
- Over 3,400 shares on TSF social media content
- Hundreds of comments each week in our Facebook community chats
22 Awareness Crew participants who raised $3,290 through their fundraising pages
Stories of Awareness in Action
One of the most powerful parts of Turner Syndrome Awareness Month is seeing how families and advocates bring awareness into their own communities.
Alyssa had a creative idea to bring awareness into her daughter’s school by organizing a “Butterfly Day.” Students received materials to take home and learn about Turner syndrome, and Alyssa shared photos of her daughter Jayne proudly holding the TS Awareness Month resources.
Grace helped introduce Turner syndrome awareness to her daughter’s preschool classroom. Her daughter brought coloring pages, informational sheets, and stickers to share with classmates, and the teacher planned to read a book about Turner syndrome to the class.
Sometimes awareness starts with a simple conversation. Teresa shared that when she asked her new doctor if he knew about Turner syndrome, he responded that he actually had three patients with TS—a reminder that awareness among healthcare providers is just as important.
Others found creative ways to raise awareness locally. Karla dedicated a special drink at her nutrition club called “Sophia’s Turner Syndrome Awareness Drink” and shared information about TS on social media to help educate her community.
And at a local coffee shop, Jessica introduced a special drink called “Madeline’s Butterfly Matcha,” donating proceeds to the Turner Syndrome Foundation while sparking conversations with customers.
These efforts show that awareness can take many forms, from classrooms and conversations to community events and fundraising.
Awareness Reaching Millions
This year, Turner syndrome awareness reached new audiences thanks to supporters with large platforms.
Actress Melissa Joan Hart shared posts about Turner syndrome on Facebook and Instagram, bringing awareness to a combined audience of more than 4 million followers.
We also shared a powerful video message from LSU Women’s Basketball Coach Kim Mulkey, who has become a passionate advocate for Turner syndrome awareness.
Creativity and Community
Our TS community also showed their support through creativity and design.
A special thank-you to our volunteer Andrea, who created several powerful designs for TSF this year, including:
- Her Fight Is Our Fight
- 1 in 2,000
- Missing an X But Still eXceptional
- Defined by Courage, Not Chromosomes
We loved seeing supporters proudly wearing their TS merchandise, including a photo of Alecia wearing TS merch and stickers shared by TSF volunteer Carlee.
And we’re excited to share that our beloved TSAM mascot Mirabel, designed by Ezelle, a woman with TS, will soon be featured on new merchandise coming soon.
Sharing Stories Every Day
Throughout the month, we shared one story each day on social media from individuals and families affected by Turner syndrome.
These stories reflected the full spectrum of the TS experience—from adult women living with TS, to parents of young and adult children, and parents who experienced loss.
Each story helped educate the public while creating connection within the community.
Community Conversations
Our weekly Facebook chats offered a space for connection, bringing together members of the Turner syndrome community from around the country. With hundreds of comments each week, these discussions allowed people to share experiences and learn from one another.
We also hosted our TSAM Patient & Parent Panel, where patients and parents shared their journeys with Turner syndrome. We discussed growth hormone, sharing the TS diagnosis, school accommodations, and many more topics. Thirty people attended live, and the recording is now available for those who couldn’t join us in real time.
Advocating for Change
Advocacy was another important focus during TSAM. Many supporters signed our petition calling for improved Turner syndrome patient care and greater research support.
Here are just a few of the powerful reasons people shared for signing:
“Turners doesn’t devastate families; lack of understanding and support does.”
“My 11-year-old has Turner syndrome and there is lack of awareness in schools, medical care, and in general.”
“I’ve seen the struggle to get insurance to cover needed medications and procedures. For young ladies and families already dealing with physical and emotional challenges, medical care should not be another huge issue.”
“I just had a miscarriage at 12 weeks and the NIPT results came back positive for Turner syndrome. I didn’t know what that was. I researched on my own and found many stories like mine. I want to raise awareness so others don’t feel alone.”
These voices remind us why awareness and advocacy must continue.
Looking Ahead
Turner Syndrome Awareness Month may only last one month, but the impact continues all year long.
Every story shared, every classroom conversation, every social media post, and every fundraiser helps move us closer to a future where Turner syndrome is better understood, diagnosed earlier, and supported with the care every girl and woman deserves.
To everyone who participated, shared their story, raised funds, or helped spread awareness this February, thank you. Your voice truly makes a difference.
Together, we are building a stronger, more informed Turner syndrome community.
To stay involved in awareness efforts year-round, join the Turner Syndrome Awareness Crew. Each week, you will receive an email explaining one action you can take to raise awareness of Turner syndrome online or in your community.
