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Greetings!

Happy Fall, Y'all! While temps in Texas are holding steady in the 80's and 90's, we have the Fall spirit anyway. This time of year, things are a buzz at TSSUS. We're working hard on our NEXT LEVEL plans for next year, and working on the TSSUS National Turner Syndrome Conference.

In this issue of the TSSUS Connect, you'll find an inspiring and very well-written "My TS Story" from TS community member, Bethany Weddle. Her approach to telling her story in a seasons-of-life style is impactful.

The election for the member-at-large position on the TSSUS Board is underway. All TSSUS members were sent an email earlier this month with the ballot. Please check your spam folder and get your vote in today.

As well, the TSSUS Annual Fundraising Campaign launched this month, and as of today, we've raised almost $16,000 toward our $90,000 goal. We want to encourage those of you who are able to give to make a donation that makes this all possible.

Be sure to check out the TSSUS Event Calendar - our Social Time Zooms are a big hit, and we don't want anyone to miss out on this avenue of support.

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 $16,000 toward our $90,000 goal. Let's go!

If you haven't joined one of our online Generational Social Time calls, you just might be missing out! Each month, people in the Turner syndrome community come together by age group online to simply meet new people, visit with old friends, support each other, and find a place of pure understanding and acceptance.

We're grateful for your feedback on this program, and would like to share Jeanna Lee's comments on the 30-Somethings Social Time and Richard's - father to Rolanda - comments on her experience with the 40-Somethings Social time. Thank you for sharing, Jeanna and Richard!

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

About the TSSUS 30-Somethings Social Time - By Jeanna Lee

I attended my first TSSUS 30 Something’s Zoom Social Time this October in hopes of finding something to occupy my Sunday afternoon, learn something beneficial, and perhaps even connect with a fellow butterfly beyond the simple introductions.

During this social time, I found a sense of community and compassion that I felt even through my laptop screen. Not only did we discuss our future plans and hobbies, but we also shared our hopes and dreams about building our family and lives.

As some of us divulged our hopes for fostering or adoption during the TSSUS 30 Something’s Social Time, we learned about two unique opportunities only available to TSSUS members: the Life Enrichment Grant and the Adoption Assistance Grant. The TSSUS Adoption Assistance Grant, which is a fairly new grant, allots up to $2000 for TSSUS members who are trying to adopt or foster a child. Members can apply through their TSSUS account. Unfortunately, this grant does not apply to fur babies as one curious individual had asked in jest. (It may or may not have been me.) At that point, my own fur baby, Mimi, had to appear on the video call as the conversation had shifted to fur babies. And of course, when one fur baby shows up, they all do. Soon, the Zoom was raining cats and dogs on all corners of my screen.

While brief, the Social Time Zoom call not only enlightened me on the available resources TSSUS offers, but also more importantly, the call reinvigorated me through bonding and reminded me I am not alone. Though my fellow butterflies will understand some of the experiences and medical challenges I experienced as a woman with TS, TSSUS also is always there to listen, to offer support, and to encourage us during our tribulations and share with us the joy in our achievements. 

About the TSSUS 40-Somethings Social Time by Richard Porior

“Rolanda's 40-Something Zoom meeting today with other TS women was wonderful! She got to share with others the things related to Turner syndrome that no one else would appreciate. Rolanda would like to stay in touch with the women in her Zoom group.” 

TSSUS in the Community

Western Washington TSSUS Group Hosted a Booth at Washington State Fair

The weekend of September 12, 2025, several TSSUS Western Washington Group members and their families hosted a TSSUS Turner Syndrome Information Booth at the Washington State Fair. They’ve invested their time and passion into this Turner syndrome awareness project for several years. We’d like to recognize this year’s volunteers with a big THANK YOU to Deanna, Barbara, Jamie, Karen, Meagin, Kristine, Hannah, and Dari. 



TSSUS Chasing Butterflies Walk - Brooksville, Florida

Walk host and volunteer, Shannon Rodgers, and about 50 others, came together on Saturday, October 4, 2025 for the TSSUS Chasing Butterflies Walk. The weather was great and everyone enjoyed getting a little exercise and making friends while raising funds for the Turner Syndrome Society of the United States. Shannon arranged for food trucks, face painting, and even a silent raffle! Thank you, Shannon!

Kristy Schreck Receives Caregiver Award

Today, Kristy was recognized at work with the 2025 Caregiver Award. She was presented with a crystal trophy at a ceremony this morning.

Please join me in congratulating Kristy for a job well done!

My TS Stories - Featuring YOU!

Evolving Needs, Evolving Care, Evolving Diagnosis

– by Bethany Weddle

Childhood: Early Awareness and Planning. From the moment I was born, my parents knew my Turner syndrome(TS) diagnosis would mean lifelong monitoring - that my needs would evolve as I grew. They were right. What no one fully explained was how much those needs would change, or how deeply each stage of life would reshape my understanding of myself.

As a child, care revolved around growth and heart health. My parents coordinated appointments, tracked milestones, and balanced a desire for normalcy. Something as simple as attending a summer camp or a sleepover took planning - making sure my medication was packed and timed properly, and checking that adults understood what I needed. While my peers just grabbed a sleeping bag and went, independence for me always came with logistics.

Adolescence: Navigating Change. Hormone therapy began in adolescence, bringing a swirl of emotions, social comparisons, and medical questions most of my friends never had to consider. My parents and I were still learning together - what was “normal” puberty versus Turner-related, what symptoms to watch, and how to prepare for future conversations about fertility and family.

Young Adulthood: Asking the Hard Questions. Approaching marriage, I faced difficult, emotional questions about reproductive health and family planning. I’m grateful for the doctors who were willing to have honest discussions, even when the answers were complex or painful. These experiences taught me early that advocacy isn’t just about pushing for a diagnosis - it’s about giving yourself permission to ask hard questions and face whatever truths come next.

Adulthood: Evolving Health and Understanding. In recent years, I noticed symptoms that didn’t fit neatly into any familiar box - fatigue, hair loss, rashes, and unexplained weight changes. Routine lab work didn’t offer clear answers, but I kept pressing. Eventually, I was diagnosed with a rare immune deficiency that often appears in adulthood. Treatment brought relief and clarity - proof that our health isn’t static, even when our diagnosis remains the same.

Discovering Patterns in Myself. Through all of this, I began noticing lifelong patterns - emotional regulation, sensory sensitivity, and executive functioning - especially through parenting my autistic child. Exploring these patterns in myself led to a diagnosis of Level 1 autism at 35. This clarity helped me make sense of experiences that had previously felt confusing or unexplained. Important Context: Like many of my diagnoses, autism may not be directly linked to Turner syndrome, but research shows that traits such as challenges in social communication, executive functioning, and visual-spatial reasoning are more commonly observed in the TS community. Understanding these traits has helped me better understand myself and navigate my evolving needs.

Reflection: Growth Through Self-Acceptance and Advocacy. Through each season - childhood camps, teenage milestones, marriage conversations, motherhood, and now mid-adulthood - my care and self-awareness have transformed. Turner syndrome has been a thread through it all, but how it interacts with my body, mind, and emotions continues to shift.



What I’ve learned is that evolution doesn’t mean instability - it means growth. It means listening closely, asking questions, and adapting as life changes. Most importantly, it means cultivating self-acceptance and the ability to advocate for your own needs — skills essential for navigating the ever-changing landscape of health, emotions, and life circumstances. My health, my needs, and my understanding of who I am will keep evolving - and that’s okay. For those of us with Turner syndrome, this evolution is part of the story. It’s not a sign of weakness but rather, of resilience - proof that we are continually learning how to care for ourselves in deeper, wiser ways. 

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

TSSUS Birthday Society Winner

🎄 1. Plan Ahead and Pace Yourself

The holidays can be overwhelming with schedules, travel, and social events. Create a simple plan for what’s most important to you — and give yourself permission to say no to things that feel too stressful.

💬 2. Set Realistic Expectations

You don’t have to make every gathering perfect or attend every event. Focus on meaningful connections rather than perfection. Remember, it’s okay to rest and recharge.

💗 3. Communicate Your Needs

Let friends and family know how they can support you — whether that means keeping gatherings smaller, offering quiet breaks, or understanding that you might need time alone.

☕ 4. Create a “Calm Space”

Find a place — at home or wherever you’re visiting — where you can take a few minutes to breathe, stretch, or listen to calming music when you feel anxious.

✨ 5. Stick to Routines When Possible

People with Turner syndrome often find comfort in structure. Keeping consistent sleep, meal, and medication routines can help reduce anxiety and keep you grounded.

💞 6. Focus on Connection, Not Comparison

Social media can make it easy to compare your holidays to others’. Focus instead on what brings you real joy — even small traditions or quiet moments.

🎁 7. Use Coping Tools That Work for You

Whether it’s journaling, deep breathing, prayer, art, or mindfulness, use techniques that help calm your body and mind.

🕯️ 8. Balance Social Time with Alone Time

Holiday gatherings can be fun but also draining. Schedule downtime between events to reset emotionally and physically.

🌿 9. Move Your Body Gently

A short walk, gentle stretching, or dancing to your favorite holiday songs can help release tension and boost your mood.

💬 10. Reach Out for Support

If anxiety feels heavy, reach out to someone you trust — a friend, family member, or support group like the Turner Syndrome Society community. You’re not alone in feeling this way.

HOMEWORK: How do you deal with anxiety around the Holidays? Share a tip that works for you.

Earlier this month, we sent out an email ballot to all TSSUS members to vote for the member-at-large board member. Please check your spam folders and submit your vote!

We love seeing your Halloween costumes - whether you're a young child, an adult, or some age in between! Share your photos by responding to this email, or send them to use via Facebook Messenger HERE.

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.

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 with us 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