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Greetings!

Time has really flown by this year - can you believe it's already September? As always, things are moving fast here at the Turner Syndrome Society of the United States, and we are working on some Very. Exciting. Things. for you.

As we approach the 4th quarter, we enter into the most important fundraising campaign of our year. This year, our theme is "Next Level" and our goal is $100,000! The funding we receive each year for the Annual Campaign is so important to this work we love. Every donation - no matter the amount - makes a big impact.

There is still time to participate in the Brod Group's TS interview study. Eligible participants include children/adolescents ages 8 to under 15 years and parents/guardians of children ages 3 to under 15 years with Turner syndrome. The study involves a one-time, confidential interview conducted via a computer-based call, lasting about 60–75 minutes for children/adolescents and 90 minutes for parents/guardians. They are offering $150 to each participant who participates in a phone only interview. If you'd like to participate, please contact Jane Beck at The Brod Group at jane@thebrodgroup.net or call (415) 317-3987.

Be sure to read the two "My TS Stories" we are featuring this month. One is written by a mom of a 12 year-old, and the other by a young woman of 22 with TS. Each are inspiring in their own ways. We'd like to feature your story! You can submit that HERE:

We appreciate you!

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.

In November, we are launching monthly Zoom calls for parents of adult women with Turner syndrome. There will be two options - Parents of Adults in their 20's and Parents of Adults in their 30's.

We've seen an increase in the requests for support from parents of women in these age groups, and want to provide the opportunity for the community to learn from and support each other.

Please join us by registering through our online Events Calendar HERE.

Vocational Rehab Services Can Help Find or Support Your Career Path

Vocational Rehabilitation (VR) Services can be valuable support for people with Turner syndrome (TS) who may face challenges related to learning differences, health concerns, or workplace accommodations. These programs are usually state-run and designed to help individuals with disabilities prepare for, find, and maintain meaningful employment.

Here’s how vocational rehabilitation services can specifically help those with TS:

1. Career Exploration & Guidance

• Assessments: VR can provide interest, skill, and aptitude testing to identify careers that match strengths while accounting for challenges (e.g., math difficulties, spatial reasoning issues, or stamina).
• Career counseling: Helps clients explore different job paths, training opportunities, and realistic career goals that align with their abilities and interests.

2. Training & Education Support

• College/training assistance: VR may pay for tuition, books, or training programs if they directly support employment goals.
• Skill development: Workshops or specialized training in areas like computer skills, workplace communication, or financial literacy.

3. Workplace Preparation

• Job readiness programs: Coaching on interviewing, resumes, workplace etiquette, and building confidence.
• Internships or trial work experiences: Provides safe opportunities to “test” a workplace or career field before committing.

4. Accommodations & Advocacy

• Job accommodations: VR can help identify and secure workplace adjustments (e.g., extra time for tasks, written instructions, assistive technology).
• Employer education: They may work with employers to explain accommodations and help create inclusive work environments.

5. Health & Support Services

• Medical or psychological support: VR may coordinate with healthcare providers to ensure health needs (e.g., hearing loss, heart conditions, fatigue management) are considered in career planning.
• Counseling: Emotional and self-advocacy support for handling workplace challenges.

6. Job Placement & Retention

• Job matching: Connecting clients with employers who value inclusivity and understand disability accommodations.
• On-the-job support: VR staff or job coaches may help with training, adjustment, and long-term support to ensure success.

State vocational rehabilitation services can help individuals with Turner syndrome identify strengths, overcome barriers, gain education/training, secure accommodations, and find supportive workplaces. This increases the chance of choosing not only the right career path but also one that is sustainable and fulfilling.

Find the Vocational Rehabilitation Office in your area with a simple Google search "Vocational Rehabilitation Services + your state".



My TS Stories - Featuring YOU!

Inspiring Strength In the Face of Adversity - by Kaitlin Wagner

Hello, my name is Kaitlin. I am a proud member of the Blackfeet tribe, and I have a beautiful 12-year-old daughter named Verna. She is the only girl among five brothers, and her spirit shines brightly in our family. Three years ago, our lives changed when Verna was diagnosed with Turner syndrome. At the time, we knew very little about the condition, and to say we were scared would be an understatement.

As a mother, the unknown can be overwhelming, but we were determined to learn and adapt for Verna's sake. We raised Verna on the Blackfeet Reservation in Montana, surrounded by the love and support of my community and our rich cultural heritage.



However, as Verna’s medical needs became clearer, we realized we needed to be closer to specialized care. This led us to Seattle, where we could access a children’s hospital with the resources and expertise necessary for her condition. Although it was a difficult transition, we embraced it as a crucial step toward securing a brighter future for Verna.

In Seattle, it has often felt like it's just the two of us relying on each other. While the tribe has offered support to the best of their ability, I am the primary source of financial support for our family. This reality can be daunting, but it has also strengthened our bond. We have learned to lean on each other for emotional and practical support through the challenges we face.

Verna has a special love for horses and cats. She always says, "I’m small but mighty," a phrase that truly embodies her spirit. She is the sweetest girl, full of love and determination, and she inspires everyone around her. Unfortunately, we haven't met anyone else with Turner syndrome yet, which can feel isolating at times.

Despite that, we have relied on the resources available through the Turner Syndrome Society of the United States and other organizations to better understand her condition and connect with the broader community. These resources have provided us with valuable information and encouragement, helping us navigate this journey. As we navigated the complexities of medical care and expenses, I decided to find a way to contribute while also supporting my family.

I started my own housekeeping business, Butterfly Housekeeping. This venture not only creates stability for Verna and me but also provides an opportunity to give back. I plan to donate a portion of my earnings to the TSSUS, an organization that has played a vital role in our journey.

We are thankful to be here, learning and growing with the help of the information and support we've received along the way. Every day, Verna shows her strength, resilience, and joy, reminding me of the beautiful journey we are on together. I hope that by sharing our story, we can bond with others facing similar challenges and inspire strength in the face of adversity.

Thank you for welcoming us into this incredible community. We are excited to continue our journey! 

Turner Syndrome Doesn't Go Away - by Kierra Kalb

Hello, my name is Kierra. I was diagnosed with Turner syndrome (TS) in 2020-2021. It’s a little fuzzy, to be honest. It was during the start of Covid, to make the time line a little clearer. I was 18 and refused to accept that anything was wrong. but my mother, (much like all mothers), knew better and made me go to the doctor. It took almost a year to fully get answers.

Blood draw after blood draw, an ultrasound and an MRI later, they told me I had Turner syndrome. Now on to how I handled/am handling my diagnosis now. I say “handling” because Turner syndrome doesn’t go away. It is not something you forget you have. But, you bloom where you are planted and adapt to situations.

At first, it was very sad. The hardest thing for me to process was my infertility, but now I find comfort in knowing I have so many options available. The support of my parents, brother, and grandparents (and lots of Chick-fil-A, lol) helped me so much after finding out. I also think finding a way to just laugh at yourself a little helps.

I know it sounds odd, but it is not for me. I have a dark sense of humor and laughing about my height sometimes helps me cope. Some other things I struggle with is anxiety that made getting my driver’s license a little difficult. I did get it and I am now 22 and driving like crazy! I drove my grandma to Illinois recently to a bookstore that was kind of a fail, so I drove to another part of Illinois so she could go to a fabric store her dad told her about.

Anxiety made work a little difficult. I started working with my dad when I was 19, and absolutely love it there now. I work in the quality department at an induction heat treatment facility. It’s pretty small and everyone knows everyone’s name there.

Now on to things I enjoy. I love Tennessee! It’s my happy place, and the beach is my second happy place. I love dogs, Jesus, and coffee (7 brew to be specific), music, reading, and being outside. True crime podcasts get me through my days at work and cuddling with my French bulldog is how I spend most of my weekends and I love it!

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

TSSUS Birthday Society Winner

The Power of ONE

Is it possible for one person to help cardiac researchers learn more about Turner syndrome and the heart? Recently, Cary (not her real name) had her second aortic valve replacement surgery. Over the last 20 years, she has participated 11 times in the Healthy Heart Screening Project at the TSSUS National Turner Syndrome Conference. Each screening took about 30 minutes and produced echocardiogram recordings of how her heart worked, and its measurements. Researchers also recorded her height, weight, health conditions, medications, and about 20 pieces of information each time. That is impactful! Cary has had some significant health issues and is determined to not only help herself but also others.

Cary's participation in this longitudinal, multi-year research study helps inform not only her current care but also the future care of people with Turner syndrome.

A sneak peek of current study data for the 115 people who participated and have last names beginning with A, B, and C. Their ages range from 7 months to 65 years, 30 had heart surgery, 76 have a bicuspid aortic valve, and three have died. Of the 115 study participants, 75 women had one echo screening, 32 had 2-4 screenings, and 8 people had 5-10 screenings.

TS researchers have written numerous articles and developed health guidelines based on the Healthy Heart Project data. The future looks bright, as the project is ongoing, and individuals like Cary continue to participate in TS studies both in-person and online. Please join the TS Research Registry and participate in approved TS research projects because ONE helps more than none. Be a part of the TSSUS Turner Syndrome Research Registry HERE.

TSSUS is Funding and Supporting Research

Did you know that the Turner Syndrome Society also funds select research projects? TSSUS solely funds the Turner Syndrome Research Registry and makes an annual financial gift to Dr. Siddharth Prakash and his team at UTHealth in Houston. Additionally, we've provided multi-year funding for the work of Dr. Michel Silberbach and his team at OHSU (Oregon Health and Science University). TSSUS also funds the Healthy Heart Project every other year at the TSSUS Conference.

Turner syndrome research requires funding, and TSSUS's research budget for 2026 will be $60,000. If you'd like to make a donation in support of our research initiative, you can do that 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.

TSSUS Gliding with your Golden Butterfly Wings

Sunday, September 21st

2:00pm - 3:00pm

This vibrant group of women with TS aged 60 and up meets monthly via Zoom.

This group meeting is a great place to find support, friendship, understanding, and camaraderie.

Madison, Wisconsin Luncheon

Saturday, September 27, 2025

1:00pm - 3:00pm

We hope you join us for a pizza lunch and social time to meet others in the community.

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 TSS 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 with us!



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