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Greetings!

Happy Thanksgiving! We at TSSUS hope that your holiday is filled with lots of family, friends, great food, and love! I always host my family for Thanksgiving, and this year is no different! I was born on Thanksgiving day a few years ago, so it's always been a special holiday to me.

In celebration of the season, and having an attitude of gratitude, the staff and board of the Turner Syndrome Society of the United States would like to offer our heartfelt thanks to you and everyone in the TS community for your 39 years of support and engagement. You all are the reason we do this work, and you mean the world to us!

None of this is possible without your support, and at this time of the year, it's more important than ever! If you're able, please consider making a financial gift to the 2025 TSSUS Annual Fundraising Campaign, Along with the Butterfly Society monthly giving program, this is our key fundraising program of the year, and your participation as a donor determines our work for the coming year. Turner syndrome is not a well-known or well-funded condition with broad support, so we rely on donations from people with TS and their families and friends. Read more about how you can help below. You can also make a donation HERE.

Speaking of team, we've added a new team member - a new conference coordinator - Morgan Crumrine. You can learn more about her in her bio in this newsletter. We're excited have her join us and look forward to the 2026 National Turner Syndrome Conference next Summer.

Have you ever wondered about you or your child's karyotype and what it might mean? This month, our team shares a karyotype report from the TSSUS Turner Syndrome Research Registry (TSRR). Your participation in the TSRR is helping researchers study TS, and your participation is important. Please take a moment to complete the TSRR survey HERE, and help support Turner syndrome research.

Voting for the TSSUS Board Member At-Large is ongoing and the deadline is December 8, 2025. We sent an email ballot to all TSSUS members in October. Please take a moment to cast your vote before the deadline.

Again, we hope you have a wonderful Thanksgiving, and thank YOU for all you do!

Becky Brown

National Director of Development & Communications

For every child born with Turner syndrome, there comes a moment when hope collides with challenge. A moment when she wonders if she will be understood, supported, and given the chance to live her fullest life. Right now, thousands of girls and women across the country are waiting for that moment of hope. And together, we have the power to take their future to the Next Level.

What We've Done

The Turner Syndrome Society of the United States (TSSUS) has already made life-changing progress - connecting families, raising awareness, funding research, and offering resources that simply didn’t exist a generation ago. But today, the needs are greater than ever. Too many girls still go undiagnosed. Too many parents feel isolated. Too many women struggle without access to the care and support they need.

How We Will Take it to the Next Level

As leaders of the TS community, we will continue to thoughtfully incorporate the learning, social, and emotional needs of the TS community into our services. Our next level plans include creating more user-friendly resources by incorporating lists, short videos, expert interviews, step-by-step instructions, charts, and stories to support the needs of everyone including those who learn differently. In 2026, we will launch the Turner Topic Monthly Series, which will deliver consistent, multi-format educational and support content around key Turner syndrome themes. The series highlights what’s most important to know, how-tos, and next steps.

With your gift today, we can:

• Create new, interactive educational resources for girls and women navigating life with TS
• Expand outreach so every family finds support at the very first diagnosis
• Fuel advocacy and research that will change the future of Turner syndrome forever.
• Increase understanding of the nuances of Turner syndrome, and how they can affect daily life

This is the moment we must act. Not tomorrow. Not someday. Now.

Your generosity has already carried us this far. But to reach the Next Level, we need you with us again today. To date, we've raised $31,000 toward our $90,000 goal. Let's go!

Invite Your Friends and Family!

People want to support causes and charities that are meaningful to their friends and family. We encourage you to take a few moments to invite yours to support the Turner Syndrome Society of the United States 2025 Annual Fundraising Campaign.

It's easy! Here is a sample email or social media post your can share as is or edit it to fit your voice. Send this to 10 people and watch what happens!

Hi [Name],

I hope you’re doing well! I wanted to tell you about the annual campaign of the Turner Syndrome Society of the United States (TSSUS). I have a soft spot in my heart for TSSUS because they’ve really helped our family since [child’s name/I] was diagnosed.

Every donation helps provide one-on-one support, online group meetings, local support groups, and even a national conference for people with Turner syndrome and their families.

If you’re able, I’d love you to join me in making a gift. Even a small amount goes a long way in helping someone feel understood, supported, and connected. Thanks for considering—and for being someone I can turn to. You can donate here:

https://turnersyndrome.app.neoncrm.com/campaigns/2025-annual-campaign

Warmly,

[Your Name]

Give it a try! We appreciate you.

Hi, I’m Morgan Crumrine, and I joined the Turner Syndrome Society of the United States (TSSUS) in September as the conference coordinator. I am excited to be part of this incredible organization and to help bring together the people, planning, and purpose behind the TSSUS National Turner Syndrome Conference. I’ve always loved being a part of something larger than myself by providing work that turns ideas into meaningful experiences.



I graduated from Texas A&M University with a degree in Agricultural Business and have spent much of my career focused on operations, budgeting, and project coordination. Outside of TSSUS, I am a mother of 3 children and actively involved in my community volunteering in the agricultural world. I currently serve as Chairman of Market Lambs and Co-Chairman of Market Goats with the Brazoria County Fair Association, where I organize the market shows helping youth exhibitors learn responsibility and confidence in their hard work. I also served for five years as Vice President of the Seeds of Hope RiceTec Community Impact Program, where I helped lead outreach projects supported by the Liechtenstein Family Foundation, focusing on strengthening local communities and supporting families in need. These experiences taught me the value of teamwork, organization, and giving back, all qualities that tie directly into my work with TSSUS.

When I’m not planning conferences or volunteering, you can usually find me out on the farm with my cattle, spending time with family, or brainstorming new ways to bring people together for a good cause. I’m truly inspired by the strength and resilience of the women and families within the Turner syndrome community. The more I learn about this great organization, it reminds me why this work matters greatly. I’m eager to contribute my creativity toward building events that connect, educate and celebrate this incredible community.

We're very close to announcing the location of the 2026 TSSUS National Turner Syndrome Conference - but let's have a little fun before it's officially official! We'll draw a random winner to receive a $100 Swag Bag from the TSSUS online store!

You can participate on our Facebook Page HERE.

Here's what you need to do to be included in the drawing:

1. Comment with the name of the city and state where you think the 2026 conference might be.
2. Enter your name, email, phone number, and address HERE if you don't have an account with TSSUS. Make sure your information is up-to-date and current so we can contact you if you're the winner. Bonus entry if you add your photo in your profile! If you already have an account, just update it if necessary and add your photo!
3. Share this post to your personal Facebook time-line.

Do all three things above to be eligible to win! Contest ends November 30, 2025.

Our Zoom gatherings are such a powerful and uplifting way to connect with others! Recently, we hosted a special parent “social time” just for parents of adults in their 20s and 30s—and the response was wonderful. Two parents joined after their daughters, who already enjoy the generational Zoom social groups, encouraged them to check it out. They came, they connected, and they loved it!

Here’s one of the heartfelt testimonials we received:

“Thank you for this group today! It was great to connect with people. I will definitely look forward to more. It's such a unique experience being a TS mom!”

TSSUS offers Zoom Social Time for parents of children and adults with TS, and each decade of life for women with TS. Be sure to check the TSSUS Event Calendar OFTEN (we add new events all the time) and register. You can do that HERE.

The Many Karyotypes of Turner Syndrome

Specific karyotypes can influence health features, medical risks, and sometimes treatment decisions. The information from the TS Research Registry data highlights the incidence of different karyotypes we have available for researchers.

A karyotype isn’t about predicting everything but about having a clearer picture of the diversity within the Turner syndrome community.

You can sign up for the registry, submit your karyotype, and receive a $20 gift card of your choice (only available in the U.S. and Canada) for your time.

A Report from the TSSUS Turner Syndrome Research Registry (TSRR) - Karyotype Distribution Among TSRR Participants

Overview

Among 1,587 TSRR participants, 545 provided valid karyotype information across Surveys 1–3. As shown in Figure 1, slightly more than half (50.64%) reported a 45,X (Classic Monosomy) karyotype, while 19.08% reported a mosaic karyotype. About 30.28% of respondents indicated that they did not know their karyotype. Participants who left the question blank or skipped it were excluded from the analysis to ensure accuracy.

Mosaic Karyotype Breakdown



This bar graph illustrates the distribution of mosaic karyotype types reported by TSRR participants across Surveys 1–3. Out of all individuals who reported a mosaic pattern, participants were categorized based on the specific karyotype combinations listed in their responses. These included 45,X/46,XX, 45,X/46,XY (Y material), Isochromosome, and Ring or partial deletion patterns. A separate category Mosaic (not specified) represents participants who indicated a mosaic karyotype without providing additional cytogenetic details. Data cleaning and categorization were performed in Stata after removing missing or “not reported” responses from the full dataset. The percentages were calculated based on valid mosaic responses, showing that the majority of mosaic participants had 45,X/46,XX (52%), followed by 45,X/46,XY (23%), and 22% who described their result only as mosaic without further specification.

Methods for Graph Creation

Data from a total of 1,587 TSRR participants were analyzed to develop the accompanying graphics. Entries that were incomplete or marked as “not reported,” “NA,” or left blank were excluded to ensure accuracy, resulting in 545 participants with valid karyotype information. Within this cleaned dataset, participants were grouped into three major categories: those with 45,X (Classic Monosomy), those with any mosaic karyotype, and those who did not know their karyotype. These categories were used to create the pie chart illustrating overall karyotype distribution. The subset of participants reporting mosaic patterns was further examined to identify specific subtypes, which were displayed in the horizontal bar chart. Both visuals were produced in Stata after data cleaning and validation to accurately reflect the karyotype patterns reported in the TSRR.

Interpretation

These findings demonstrate that most participants who knew their results reported either 45,X or a 45,X/46,XX mosaic pattern. Importantly, approximately one-third of participants were uncertain of their karyotype, highlighting a continued need for genetic education and counseling within the Turner Syndrome community. The refined analysis, excluding non-responses, provides a clearer understanding of the distribution of karyotypes among TSRR participants.

More TS Research Updates from the Field

• Nicole Tartaglia of the University of Colorado School of Medicine wrote, “We are very pleased to share that we received an official Notice of Award today for the NASCARR (Network for advancing sex chromosome aneuploidy research readiness) RDCRN (Rare Diseases Clinical Research Network) grant! It has been quite the ride since we started this application process in 2023, and thankful all of our hard work has paid off.” A link to an overview of the research project can be found HERE.

• The Scientific Advisory Board approved a study for a research project at Northwestern University titled, Gonadectomy Decision-Making for Children with Turner Syndrome with Y Chromosome (TS+Y): Caregiver Experiences and Perspectives. Participants in the TS Research Registry will be invited to participate. Please join the registry if you would like to be invited and want to share your experience.

• Unfortunately, the Research on Lymphedema associated with Turner Syndrome grant was not awarded to the University of Texas in Houston as we were hoping. Thank you to Melissa Aldrich, MD and all involved who supported the grant work.

My TS Stories - Featuring YOU!

My Journey Inspires Me to Help Others - by Rachel Pompas

Hi, my name is Rachel Pompa, and I was diagnosed with mosaic Turner syndrome at the age of 19 by my uncle, who is an OBGYN.

Growing up, I faced some challenges, including being diagnosed with a visual processing learning disability in second grade and later experiencing mental health struggles during my senior year of high school.

I dealt with stress about college, heartbreak from my first relationship, and difficulty finding the right medication. When I learned I had Turner syndrome (TS), it felt as though the missing pieces of my life finally came together. While it was heartbreaking to discover that I could not have biological children, I am grateful that I found out when I did.

Today, I am married to the sweetest, most supportive husband, and together we plan to grow our family through adoption. I am now a Licensed Clinical Social Worker, and I’m passionate about helping my clients reach their goals and overcome life’s challenges.

My personal and professional journeys have inspired me to get more involved with the Turner Syndrome Society. I hope to support and empower young women who are navigating their own TS diagnoses, as well as mothers who are pregnant with a child who has Turner syndrome.

I believe I have a unique perspective and a deep sense of empathy to offer — and I would be honored to contribute to this community that has given me so much understanding and purpose.

Read more inspiring, challenging, and heartfelt TS Stories on the TSSUS Blog HERE.

TSSUS Birthday Society Winner

We've got some exciting new merch in the TSSUS Butterfly Store! Introducing the Next Level Hot Air Balloon Magnet and the 2025 collectible Christmas Ornament! These are available to order now! Get yours HERE.

For a limited time, all t-shirts in the TSSUS Butterfly Store are just $5 each (while supplies last)! This excludes the 2025 conference shirt. Now is the perfect time to get a back-up of your favorite style, or to pick up a few high-value holiday gifts for a very low price! Shop HERE.

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!

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 us! Be sure to share your TS Stories so we can introduce you to the TS community! Please donate to the TSSUS Annual Campaign - every donation counts.



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