View as Webpage

Greetings!

As summer begins to give way to fall, there is so much happening at TSSUS, and so much to be excited about!

We’re still smiling about the incredible connections, learning, laughter, and memories made at our 2026 National Conference. In this issue, we’re sharing our Conference Report along with something many of you have been waiting for: audio recordings, videos, and presentation slides from many of this year’s sessions. Whether you attended in person or couldn’t join us, there’s still plenty to discover.

We’re also looking ahead. Our Give Hope Wings Annual Fundraising Campaign is about to take flight, the TSSUS Butterfly Society is celebrating an amazing 10-year milestone, and new opportunities in Turner syndrome research continue to remind us how important an informed and engaged TS community can be.

You’ll also meet a family who has graciously shared the beautiful and deeply moving story of their daughter, Juniper Skye. Stories like Juniper’s remind us why connection matters—and why every person and family touched by Turner syndrome deserves to know there is a community ready to welcome, support, and walk alongside them.

And because we believe there should always be room for a little fun, we have upcoming events, a brand-new collectible holiday ornament, Butterfly Store goodies, and plenty of ways to stay connected.

There’s a lot packed into this issue, so grab a cup of coffee, get comfortable, and enjoy!

Thank you for being part of TSSUS and for helping us continue to Educate, Empower, and Connect.



Warmly,

Becky Brown

National Director of Development & Communications

2026 National Conference: What a Weekend!

What happens when 558 members of the Turner syndrome community come together from 43 U.S. states and British Columbia? You get an incredible weekend filled with learning, laughter, new friendships, meaningful research and plenty of unforgettable moments! Even more exciting, 222 attendees were experiencing a TSSUS National Conference for the very first time.

Our 2026 National Turner Syndrome Conference was about much more than presentations. Attendees participated in groundbreaking research, took advantage of hearing screenings and small-group consultations, asked questions of experts, and connected with people who truly understand their experiences. More than 40 people joined the ECHO Study, 49 received hearing screenings, and more than 55 participated in Dr. Dean Mooney’s group consultations.

And then there was the fun! Karaoke, dancing, creative costumes, youth activities, the dads’ group, bowling, the Butterfly Store, Turner Town and lots of laughter made this a conference to remember.



Our new 2026 Conference Report captures the numbers, highlights, photos and special moments that made this year’s conference so memorable. Take a look. You just might spot yourself or someone you know!

Missed a Session? Want to Hear It Again?

Great news! Audio recordings, presentation slides, and handouts from many of our 2026 National Turner Syndrome Conference sessions are now available online. Whether you joined us in Raleigh and couldn’t fit every session into your schedule—or weren’t able to attend this year—you can now catch up on valuable information from conference experts, including sessions on research, reproductive health, liver health, dating and intimacy, and more.

Each year, we record new presentations on topics that have not yet been covered. You can find our archive of conference topics and presentations on our YouTube channel HERE.



Listen, learn, and revisit your favorite sessions anytime!

Give Hope Wings: Our 2026 Annual Campaign Is Coming!

Hope can begin with an answer, a connection, or simply discovering that someone else understands. That’s the heart of this year’s TSSUS Annual Fundraising Campaign, Give Hope Wings.

Your generosity helps people and families touched by Turner syndrome find trusted information, meaningful connections, opportunities to learn and participate in research, and the confidence to move forward through every chapter of life.

Keep an eye on your mailbox at the beginning of October! Our Give Hope Wings campaign will be arriving soon, and we hope you’ll take a few moments to read about the difference your support makes. But you don’t have to wait for the mail; you can make your gift online today.

Every gift, large or small, helps ensure that when someone turns to TSSUS, they find answers, support, connection and HOPE.



Will you help us Give Hope Wings? 

One TSSUS donor recently shared why he and his wife have continued to support TSSUS:

“We have delighted to support TSSUS the past several years. Our first daughter was a stillbirth at 20 weeks, and was thought to likely have Turner syndrome, as her karyotype was XO. We have had an interest in TS ever since. One of my closest co-workers at my office has TS as well. She has typical medical problems of TS but is very highly functioning and successful as a nurse, and it is delightful to see. Thank you for the good work that TSSUS does.”



His story reminds us that the reasons people connect with Turner syndrome are deeply personal, and that the impact of TSSUS reaches far beyond any

single individual. Your gift to the TSSUS Annual Campaign helps make it possible for someone, somewhere, to find the information, encouragement, connection, and hope they need.

The Turner Syndrome Society is excited to welcome Vanshika Chaudhary to the TSSUS Turner Syndrome Research Registry (TSRR) team beginning in October 2026. As a Research Assistant with McGovern Medical School's Internal Medicine and Genetics program, Vanshika will play a key role in advancing the TSRR.

With support from TSSUS funding, her efforts will help connect researchers with valuable registry data, support data review and reporting, and ensure that research insights are shared back with the Turner syndrome community in meaningful ways.

Advances in Turner Syndrome Research: Part 1 & Part 2

At TSSUS, we believe the Turner syndrome community deserves access to the latest research, emerging findings, and the questions researchers are working to answer.

That’s why connecting our community with researchers and sharing new developments in TS research remain such important parts of our work.

If you weren’t able to attend the 2026 TSSUS National Conference, or simply want another opportunity to learn, don’t miss Advances in TS Research, Parts 1 & 2, presented by Shanlee Davis, MD and Siddharth Prakash, MD, PhD.

These two presentations explore emerging findings, important areas of study, and what researchers are looking at next.

You’ll also learn why participation in Turner syndrome research registries matters and how the TS community can play an important role in helping move research forward.



Watch the videos, view the presentation slides, and stay informed about what’s happening in Turner syndrome research.

Add a little TSSUS spirit to your holiday season with our 2026 TSSUS Holiday Ornament!

Featuring our signature butterfly wrapped in colorful Christmas lights and topped with a festive red bow, this special ornament is a cheerful way to celebrate the season and the Turner syndrome community that means so much to us.

Hang it on your own tree, give one to someone special, or start a TSSUS ornament tradition for your family. Order yours today and let your spirit shine this season!

As we celebrate 10 years of the TSSUS Butterfly Society, we’re inviting even more people to help carry this incredible legacy forward.

A monthly gift—whether $15, $30, $50, or an amount that is meaningful to you—provides dependable support TSSUS can count on month after month. It helps ensure that people touched by Turner syndrome continue to have trusted information, meaningful connections, educational opportunities, research resources, and a community that is there when they need it.

And there’s a special way to celebrate our 10th anniversary! Join the Butterfly Society at $30 a month—or increase your current monthly gift to $30—and receive an exclusive TSSUS Butterfly Society T-shirt.

Nearly $900,000 has already been given through the Butterfly Society. Imagine what the next 10 years can make possible.

Join the Butterfly Society today. Give monthly. Create lasting impact. Help hope keep flying.

The Turner Syndrome Society

My TS Story

Our daughter, Juniper Skye, was deeply loved long before we ever got to hold her. During my pregnancy, we received the devastating news that Juniper was at high risk for Turner syndrome (TS).

As the pregnancy continued, ultrasounds showed she was facing several serious complications. We were told she had a very small chance of surviving the pregnancy, but we chose to continue loving her and wanted to give her every day we could.

I spent those weeks learning everything I could about TS while trying to prepare myself for possibilities no mother should ever have to face. I didn't know exactly how our story would end, but I knew one thing from the beginning: Juniper was my daughter, and she deserved to be loved and remembered.

At 16 weeks, we learned Juniper's heart had stopped beating. On July 28, 2026, I delivered my beautiful daughter. She weighed just one ounce and was four inches long. Even though her life was incredibly short, Juniper changed our entire family. She has five brothers who will grow up knowing they have a little sister named Juniper. She will always be part of our family, even though we don’t get the chance to watch her grow.

We recently received her final genetic results, confirming that Juniper had classic Turner syndrome (45,X). Having that confirmation was painful, but it also gave us a sense of closure. We had spent so much of the pregnancy wondering what was happening inside her little body, and now we finally had an answer.



One of the most meaningful decisions we've made is to donate Juniper's DNA samples for Turner syndrome research. Juniper may not have had the opportunity to grow up, but we hope that something from her can help researchers better understand TS and help other babies, girls, and families in the future.

I wish I could tell Juniper what an impact she has already had. I wish I could tell her about her brothers and show her the places she would have grown up in. I wish I could have watched her take her first steps, hear her laugh, and celebrate her birthdays.

But I can tell her story. I can say her name. Juniper Skye was here. She was loved. She was wanted. She was our daughter. And she mattered. If sharing her story can help even one family feel a little less alone after a Turner syndrome diagnosis or pregnancy loss, then I will consider that another part of Juniper's legacy. We will carry her with us for the rest of our lives. 🦋💜

TSSUS Birthday Society Winner

As we tip-toe into Fall and cooler weather, this wardrobe staple is a

must-have! Order yours today in the TSSUS Butterfly Store.

Around 2017, the staff and board of directors considered several options for the TSSUS vision statement before settling on “An active and engaged TS community”. We believe that those with TS and their families were best served by being actively connected to TSSUS and other members of the TS community. 



TSSUS offers a wide-ranging event calendar that includes events that are purely social, and others that offer valuable and important educational topics. Pinky-swear you'll check the Event Calendar on the TSSUS website often to find an event that interests you.

All of our events require pre-registration. You can register for all of these events on our website using the Event Calendar link below.

We have local and in-person events coming up in:

• September 19 - TSSUS Western Michigan Support Group Picnic, DeHoop, Michigan. Get your free ticket HERE.

And online events, including:



• September 20 - Gliding with Your Golden Butterfly Wings Online Social for women with TS ages 55+. Get your free ticket HERE.

• September 27 - Parents of Adults (18+) with Turner Syndrome. Find support from other parents. Get your free ticket HERE.

• September 27 - Butterfly Book Club Online Discussion. The book for this session is The Butterfly Chronicles by Nicole Irene Cleveland. Get your free ticket HERE.

• October 4 - TSSUS 40-Somethings Online Social Time for women with TS ages 40-49. Get your free ticket HERE.

• October 4 - TSSUS 50-Somethings Online Social Time for women with TS ages 50-59. Get your free ticket HERE.

• October 11 - TSSUS 20-Somethings Online Social Time for women with TS ages 20-29. Get your free ticket HERE.

• October 11 - TSSUS 30-Somethings Online Social Time for women with TS ages 30-39. Get your free ticket HERE.

• October 18 - Gliding with Your Golden Butterfly Wings Online Social for women with TS ages 55+. Get your free ticket HERE.

• October 25 - Butterfly Book Club Online Discussion. The book for this session is Not Selling Myself Short by Sally Wisner Ott. Get your free ticket HERE.

• November 15 - Gliding with Your Golden Butterfly Wings Online Social for women with TS ages 55+. Get your free ticket HERE.

Shopping is always fun, and when you shop with a purpose it's even better! We love to share these opportunities with you to give you additional ways you can support TSSUS - through third party fundraisers.



Stay connected and in the loop on the latest news with TSSUS. Make some new friends. Join one of our official TSSUS Facebook groups!



Thank you for taking the time to read and share the TSSUS Connect newsletter. If you have something you'd like us to consider for publication, please send it to becky@turnersyndrome.org.

As always, we appreciate you!

Becky Brown, National Director of Development & Communications



 Turner Syndrome Society of the United States

 Toll Free: 800.365.9944

800-365-9944 | info@turnersyndrome.org