Throughout February, we proudly celebrated Turner Syndrome Awareness Month, honoring the incredible women and girls who show strength, resilience, and determination every day. While the official awareness month may be coming to an end, our commitment to raising awareness must continue all year long. By keeping the conversation going, we can ensure that more doctors, legislators, and members of the public learn about Turner syndrome (TS) and how they can support the community.
Keep reading to hear a few of the inspiring stories we have shared throughout February, and to find out ways you can help keep the momentum going all year!
Turner Syndrome Awareness Month 2025 Stats
- On social media, we reached a combined 575,000 impressions of our posts across Facebook, Instagram, and LinkedIn.
- Over 50 people shared their stories for TSF fundraisers or social media.
- We gained 90 signatures on our Petition for Turner Syndrome Awareness.
- We had 869 comments left in our weekly Facebook chats which sparked conversation and connection among the TS community.
TSAM Stories of Impact
Many people shared stories of how they raised awareness of TS throughout February! Here are some excellent examples:
The Turner Syndrome Awareness Month Card Auction organized by Lori Kobular had 60 supporters who together, raised $2,287 to support our mission! You can still buy cards here.
Sadie taught her class all about Turner syndrome! Her teacher said ‘She did a great job and the Kahoot Sadie made was super!!!! She does such a great job in front of a group!’ Her mom, Wendy, said that she looks looks forward to this every year and they feel blessed to have a school that allows her to share this every February.
There was a lovely Turner syndrome community meetup with about 15 attendees in Hershey, PA, organized by Kayla Ganger. If you would like to set up an event near you, fill out our Event Organizer Form.
TSAM News
Turner Syndrome Stories
Elvie’s Journey
Diagnosed at just 16 weeks in utero, 9-year-old Elvie is thriving today. She is happy, healthy, smart, funny, and active in sports. Her family believes in being open and honest about her diagnosis so she can confidently share her own story and help break barriers. They continue to raise awareness so that no family feels alone in their TS journey.
Angela’s Perspective
Having grown up with Turner syndrome and now working as a nurse, Angela understands the importance of receiving and providing compassionate, competent care. Her experience has shaped her passion for advocating for better healthcare and support for the TS community.
Millie’s Light
At 18 months old, Millie was diagnosed with Turner syndrome after undergoing genetic testing for several other conditions. Today, she is a bright light in the world, spreading joy and inspiration. Her family is committed to raising awareness, knowing that many individuals affected by TS may not even have a diagnosis yet.
Sammie’s Story
Sammie faced numerous health challenges and medical diagnoses throughout her 26 years of life, all stemming from Turner syndrome. In 2019, she tragically passed away due to an aortic aneurysm. Despite her struggles, Sammie remained kind and compassionate. She often reminded others to “Be Kind,” understanding firsthand the importance of empathy. She was resilient, beautiful inside and out, and always put others before herself.
Cardiovascular health remains one of the most pressing concerns for individuals with Turner syndrome. That’s why we are excited to share a groundbreaking article on a historic mitral valve replacement surgery. This advancement represents hope and progress in medical interventions for TS patients. Read more here.
Keeping the Momentum Going
Turner Syndrome Foundation (TSF) works tirelessly all year to support TS patients and caregivers through education, advocacy, and research, all at no cost to those we serve. But we cannot do it alone. We need your ongoing commitment and support to keep the momentum going beyond February.
Everyone can do at least one thing to continue TS Awareness:
- Let us know your email or text preference so we can provide you with information & opportunities that meet your interest. Sign up here.
- Subscribe to the blog to receive timely articles. Subscribe here.
- Discover ways to take action in your community. Learn more.
- Put your money to work by investing in the future of TS. Become a sustaining donor and member of the 1938 Giving Club. Why 1938? This is the year TS was identified by Dr. Henry Turner and is symbolic of the many girls & women who have faced challenges over the years. We have to do better! Please join us in helping to sustain the mission. Set up your gift and manage it yourself. You can start, pause, and even stop at any time. You can give monthly, quarterly, or annually for an amount that works for you. Join here.
Support Turner Syndrome Research Initiatives
Patients and caregivers are urged to participate in research initiatives to help advance scientific understanding of TS.
- Have questions or need support? Complete a new intake form or update your TSF registry. This helps our dedicated team provide patients & caregivers with the support they have come to rely on. Update your registry here.
- Help researchers learn about your life with TS through TSRX. The Turner Syndrome Research Exchange Clinical Registry provides researchers with critical data needed to advance scientific studies of TS. Learn more here.
- The NIGMS Repository at Coriell Institute for Medical Research Turner syndrome repository is open to receive non-European descendants, patients, and family members to donate blood & tissue samples. Contribute here.
Her Fight is Our Fight
Each person’s journey with Turner syndrome is unique, and we are dedicated to providing support so they can thrive. From physical health to mental well-being and social challenges, we are here for the community every step of the way.
Your donation today will help TSF continue advancing awareness, advocacy, research, and education. Together, we can make a lasting impact!
Written by Liz Carmines-Broush, Consultant. Designed by Delvis Rodriguez, Data Management
© Turner Syndrome Foundation, 2025
