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Greetings!

All month, we've been focusing on Anxiety in Turner Syndrome on our social media platforms. We started off with a survey asking YOU how anxiety shows up in your every day life.

We built a campaign around some common issues girls and women with Turner syndrome face when it comes to navigating home, school, career, and interpersonal relationships and we've received some great feedback from many of you.

We hope you've taken a minute to join us in the TSSUS Facebook Group where some insightful conversations are happening! Keep an eye out for the post-survey we'll be sending to your email May 31st to see if you've gained any new insights or strategies.

In other big news, the 2026 TSSUS National Turner Syndrome Conference is just over 2 months away! We surely hope to see you there. There are a few BIG deadlines coming up. If you'd like to pre-order your conference t-shirt, the deadline is June 15th. We will have extra's in the TSSUS Butterfly Store at the event, but be sure to pre-order to guarantee you get the size and color you want. All pre-ordered shirts will be distributed in your registration packets at the event.

The deadline to make your hotel room reservation with the TSSUS discounted room rate is June 18th.

TSSUS Conference coordinator, Morgan, has planned and exciting optional outing to Bolero - a Bowling and Entertainment Center. You can purchase your ticket for that outing in the body of this newsletter. Space is limited, and spots will be offered on a first-come-first served basis.

Applications for consultations with Dr. Mooney and hearing screenings are open. This year, Dr. Mooney will be consulting with small groups so that more people can take advantage of this special consultation.

Take a few minutes to read the latest findings from the TSSUS Turner Syndrome Research Registry (TSRR) from Survey 4 about bone health. These reports are made possible from your participation in the TSRR. You can join the TS Research Registry here.

As always, thank you for being a part of the TSSUS community!

Becky Brown

National Director of Development & Communications

For girls and women with Turner syndrome, estrogen is not optional. It's an essential hormone that supports both physical and emotional health. Because most people with TS have ovarian insufficiency, the body does not produce enough estrogen on its own, making prescribed estrogen replacement therapy (ERT) a cornerstone of lifelong care.

International clinical guidelines strongly recommend taking estrogen as prescribed to support bone strength, heart health, sexual development, and overall quality of life.

Skipping doses or stopping estrogen without medical guidance can allow estrogen levels to fall too low, increasing the risk of long‑term complications such as osteoporosis and cardiovascular disease, as well as day‑to‑day symptoms that affect how you feel and function.

Low estrogen can also have a real and noticeable impact on mental health.

Research shows that drops in estrogen are associated with increased anxiety, mood changes, irritability, sleep problems, and difficulty concentrating, symptoms that are sometimes mistakenly viewed as “just stress” or a personal failing. In reality, estrogen plays a key role in brain chemistry, including systems that regulate anxiety and emotional stability.

For women with TS, taking estrogen consistently as prescribed helps maintain more stable hormone levels and can reduce the risk of anxiety and other mood symptoms related to estrogen deficiency. If anxiety or emotional changes are present, it’s important to talk with a healthcare provider—not to stop estrogen, but to make sure the dose and delivery method are right for you. 

We’re excited to share three special opportunities available exclusively to registered attendees of the 2026 TSSUS National Turner Syndrome Conference in Cary, North Carolina!

These optional experiences are designed to add even more connection, learning, and support to your conference experience.



To participate in any of the opportunities below, attendees must first be registered for the conference. Register for the Conference HERE.

Information on how to register for the bowling outing, hearing screenings, and group consultations with Dr. Mooney will be emailed to all conference attendees this Friday, May 15th.

Let's Go Bowling!

Sunday Bowlero Cary Group Outing

On Sunday, we are going bowling! Join us for a fun and relaxed group outing on Sunday, July 26, from 11:00 AM - 1:00 PM at Bowlero Cary! This is a wonderful chance to connect with other attendees, enjoy some friendly competition, and make new memories before heading home from the Conference. Tickets are $50 per person and include 2 hours of bowling, shoe rental, pizza, unlimited soft drinks, and transportation to and from the hotel.

This optional outing is available to registered conference attendees on a first-come, first-served basis, so sign up early! Learn more HERE.

Small Group Consultations with Dr. Dean Mooney

Dr. Mooney is a long-time conference

favorite and his consultations are much sought after. This year, we're doing things a little differently. We're introducing small group consultations.

Conference attendees ages 14 and older may request consideration for a small-group consultation with Dr. Dean Mooney by completing the request form. We will place as many people as we can in a group consultation, but filling out the form doesn't guarantee placement in a group.

Learn more HERE.

Hearing Screening Sign-Ups

TSSUS and Atrium Health Wake Forest Baptist are offering complimentary hearing screenings during the conference. You need to sign up for a screening in advance, and this is open to girls and women with TS of all ages.

Each screening will take approximately 10 minutes, though attendees should plan for up to 30 minutes total to allow time for check-in, screening, and a brief follow-up.

Learn more HERE.

Adrianna San Roman will be attending the conference as a researcher this year. The article here is from 2020 Meet a Whitehead Postdoc: Adrianna San Roman | Whitehead Institute. In it, it says her dream is to have her own lab and she does - at Duke University- in Raleigh. She's also studying how genes affect hearing loss in TS and will recruit participants for a cheek-swab study at the conference. 

She became most interested in TS research after attending the 2016 TS symposium coordinated by TSSUS and TSGA. Exciting things are in the works!

Important Upcoming Conference Deadlines

The 2026 TSSUS National Turner Syndrome Conference will take place at the Embassy Suites by Hilton Hotel, 201 Harrison Oaks Blvd, Cary, North Carolina 27513. The deadline to make a room reservation using the TSSUS discounted room block rate is June 18th.

This year, we're taking pre-orders for the official 2026 Conference t-shirt. The deadline to pre-order is June 15th. We will be selling the shirts on-site in the TSSUS Butterfly Store, but if you want to make sure you get the size and color you want, we encourage you to pre-order.

As the Turner Syndrome Society of the United States approaches the 10th anniversary of the TSSUS Butterfly Society, we find ourselves reflecting with deep gratitude on what can happen when a community chooses to give not just generously - but faithfully.

Nearly ten years ago, the Butterfly Society was created as TSSUS’s exclusive monthly donor program, built on a simple but powerful belief: that consistent, sustainable support can change lives every single month. Today, because of the kindness and commitment of so many of you, that vision has flourished.

Together, Butterfly Society members have contributed just under $900,000 to advance education, research, awareness, advocacy, and support for every life touched by Turner syndrome. The Butterfly Society remains one of TSSUS’s most important sustaining initiatives, helping ensure families have access to trusted resources, clinical care information, educational programs, support groups, conferences, research opportunities, and personal connections throughout every stage of life.

To every founding member, every current monthly donor, and every supporter who has chosen to give month after month - thank you. Your generosity has created something far greater than a fundraising program. You have created stability, opportunity, and hope.

As we celebrate this remarkable 10-year milestone, we invite others to become part of what comes next.

If you have ever wondered how you can make a meaningful difference, this is one of the most powerful ways. A monthly gift of $15, $30, $50, or any amount that is meaningful to you becomes part of something much larger - a dependable keystone that helps TSSUS serve the TS community not just today, but for years to come.

The Butterfly Society currently begins at $15 per month and includes an individual TSSUS membership. With a gift of or increase to $30 per month, you will receive an exclusive TSSUS Butterfly Society t-shirt. 

Join us in welcoming these new or returning donors into the TSSUS Butterfly Society Family

Nancy Bryant

Javonna Cobarris

Nikki Felder

Tracy Garner

Lydia Hommelsheim

Susanne Kyzivat

Bindu Lal

Sarah Prokai

All Butterfly Society supporters and Major Donors will receive an invitation to the Exclusive

V.I.P Butterfly Society and Major Donor Reception

(child care will be provided onstie)

on Friday evening at the Conference in Cary, North Carolina

May Featured My TS Story

I Embrace and Accept Myself for Who I am - by Ellen McCardell

My Turner syndrome diagnosis didn’t come until I was eleven, when my pediatrician noticed I was significantly below average on the growth chart. Shortly after, I was also diagnosed with Crohn’s disease.

At a time when I was already transitioning into middle school, this compounded my struggles with bullying and social isolation. I felt ashamed and different. Dancing was my refuge throughout my childhood. I loved all styles, but it wasn’t until adulthood that I realized how much of an emotional outlet it had been.

Today, I still crave that kind of release, and I’ve found a gentler way to channel it through yoga.

I’ve always had a deep love for reading, and I can easily lose myself in a great book. I’m also a creative person, and there’s nothing more satisfying than getting lost in the flow of my expressive arts journal.

Resilience and determination are qualities that have been a part of me for as long as I can remember. I’ve always believed that the challenges I faced would never define my limits.

In college, I found my passion for Psychology, which led me to pursue counseling in graduate school. Now, as a licensed professional counselor, I’m dedicated to helping others navigate the mental health challenges that often accompany chronic illnesses - a mission I feel deeply connected to because of my own experiences.

Growing up, I had a basic understanding of what Turner syndrome meant, but it wasn’t until I reached adulthood that I truly grasped how miraculous it is that I’m here today. For that, I’m profoundly grateful.

Over the years, I’ve gained a deeper understanding of both my diagnosis and myself. However, it wasn’t until I started my infertility journey with my husband that I truly understood how emotionally challenging this path could be. I’ve never met another person with Turner syndrome, nor have I attended a conference, but I’m hoping to change that this year.

One of the most important lessons I’ve learned in my own therapeutic journey is that what others might see as quirks are actually some of my best qualities. I continue to embrace and accept myself for who I am, because, no matter what anyone else says, I know I’m beautiful - inside and out. We all are, in our own unique and extraordinary ways.

Survey 4 - Bone Health Findings

This report summarizes the preliminary findings from Survey 4 regarding bone and skeletal health conditions among the TSSUS Turner Syndrome Research Registry (TSRR) participants. The analysis includes overall prevalence, stratification by karyotype group, and stratification by age group (using education level as a proxy for adult versus child/adolescent status).

These findings represent self-reported data from approximately 257 participants.

To support interpretation of the findings below, the following brief explanations describe the bone and skeletal conditions assessed in the Survey among participants.

Read the complete report HERE.

TSSUS Birthday Society Winner

Summer is Coming! Get your new butterfly icon drinkware and lots of great merch in

the TSSUS Buitterfly Store!

Around 2017, the board of directors considered several options for the TSSUS vision statement before settling on “An active and engaged TS community”. They believed that those with TS and their families were best served by being actively connected to TSSUS and other members of the TS community.  So far in this year, 481 people have attended an event that occurred by May 1.

This doesn’t include registrations for future events, like the conference. There are more than 400 people registered for future events. Aside from the conference. The TSSUS Butterfly Book Club has been the most popular event to date, where we discuss books written by authors with TS or family members.

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 that 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.

Check the Events Calendar for events scheduled for 2026! Make it a habit to check the calendar OFTEN so you don't miss out!

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

• May 16th - TSSUS Western Washington Symposium, Seattle, Washington,

• May 16th - TSSUS New York Group Meet and Greet, Middletown, New York

• May 16th - TSSUS West Michigan Group Lunch, Wyoming, Michigan

• June 6th - TSSUS Georgia Group Brunch, Peachtree City, Georgia

• June 7th, TSSUS New York Meet and Greet, Middletown, New York

• June 20th - TSSUS Barbeque Butterfly BBQ, Vancouver, Washington.

• July 24-25th - TSSUS National Turner Syndrome Conference, Cary, North Carolina

• August 8th - TSSUS New York Meet and Greet, Middletown, New York

And on-line events, including:

• May 17th - Golden Butterflies (Ages 55+) Social Time on Zoom

• May 17th - TSSUS Butterfly Book Club

• June 7th - TSSUS Butterfly Book Club

• June 14th - 20-Somethings (Ages 20-29) Social Time on Zoom

• June 14th - 30-Somethings (Ages 30-39) Social Time on Zoom

• June 21st - Golden Butterflies (Ages 55+) Social Time on Zoom

• June 28th - 40-Somethings (Ages 40-49) Social Time on Zoom

• June 28th - 50-Somethings (Ages 50-59) Social Time on Zoom

• August 16th - Golden Butterflies (Ages 55+) Social Time on Zoom
• 
• August 23rd - TSSUS Butterfly Book Club

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.

We can't wait to see you in North Carolina for the 2026 Conference!



All the best!

 Becky Brown, National Director of Development & Communications



 Turner Syndrome Society of the United States

 Toll Free: 800.365.9944

12620 FM 1960 W Rd, Suite A4 #210, Houston TX 77065 | 800-365-9944 | info@turnersyndrome.org