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Greetings!

This month, we want to highlight those of you who make the Turner Syndrome Society of the United States (TSSUS) possible - our donors and supporters!

From our founding volunteers 39 years ago (many of whom are actively engaged with TSSUS today), to our committed and visionary monthly donors in the TSSUS Butterfly Society, you all play a heartfelt role in shaping the work we do here.

In this issue of the TSSUS Connect, we want to spotlight those of you who give so generously of your time and treasure to ensure that every individual with Turner syndrome has a supportive and compassionate community who values the person over the condition. We are a SOCIETY - and that means that all of us together have a place to call "home".

At TSSUS, we also believe that knowledge is power - knowing the most about Turner syndrome and how best to care for yourself or your child both medically and mentally creates opportunities to enrich your life. With research initiatives like the TSSUS Healthy Heart Project at the TSSUS National Turner Syndrome Conference, and the TSSUS Turner Syndrome Research Registry (TSRR), TSSUS is advancing what is known about TS in real, measurable, and applicable ways.

Through our collaborations with many of the world's leading medical and scientific experts and institutions, we share this information with you on our website, in publications, and with free resources. With things like the TSSUS Cardiac Emergency Alert Card, Turner Topics, and the summary booklet of the Clinical Practice Guidelines, TSSUS invests in resources you can use, understand, and share with your care team.

All of this to say "thank you"! Thank you for supporting this work, thank you for participating in Turner syndrome research, thank you for being the "social" in "society", and thank you for participating in our online and in-person events. None of this is possible without you, and we are so glad you're here!

Becky Brown

National Director of Development & Communications

TSSUS Major Donors 2025-2026

The TSSUS Butterfly Society - our incredible community of monthly supporters - has truly become the heartbeat of the Turner Syndrome Society of the United States. Since its inception in May 2017, the Butterfly Society has provided steady, reliable, and meaningful support that powers everything we do.

Because of you, each monthly gift creates lasting impact. Your generosity helps us expand vital grants for research, provide scholarships for conference attendees and college students with Turner syndrome, and offer life-enrichment grants to individuals. It also allows us to host our inspiring annual conference, foster connection through supportive online communities, and bring people together through local events and gatherings across the country.

Simply put, Butterfly Society donors have helped shape and sustain our mission for nearly a decade - contributing close to $900,000 in support. As we look ahead, we’re excited to reach an incredible milestone of $1 million in funding by next year - and we would love for you to be part of that journey.



To everyone whose name is on this list: thank you, sincerely and deeply. And if you’re not yet part of the Butterfly Society, we would be honored to welcome you.

If you were once in the TSSUS Butterfly Society and you don't see your name here, we would love to have you come back! Your renewed support can make a real difference in the lives of those with Turner syndrome.

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

V.I.P Butterfly Society and Major Donor Reception

on Friday evening at the Conference in Cary, North Carolina

Have you registered for the 2026 TSSUS National Turner Syndrome Conference! We hope you can join us July 24-25, 2026 in the beautiful city of Raleigh/Cary, North Carolina!

Our event 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.

Help Us Spread the Word

We’re excited to share the flyer for the 2026 TSSUS National Turner Syndrome Conference! If you’re connected with clinics, providers, or families, we’d greatly appreciate you sharing it within your networks.

As part of our outreach this year, we are sharing conference materials directly with Turner syndrome clinics and clinic directors to expand awareness and strengthen connections across care teams.

If you have contacts you’d like us to reach out to, feel free to share them with our team. Printed copies of the flyer can be made available upon request by contacting conference@turnersyndrome.org

We have some great speakers and sessions planned for this year! Here is a sneak peek.

Speaker Spotlight: Dr. Dean Mooney, Ph.D., Maple Leaf Clinic

As you may have seen on the Schedule at a Glance, TSSUS is excited to welcome back Dr. Mooney to the 2026 TSSUS National Turner Syndrome Conference.

His sessions continue to be a highlight of the conference and a reason many attendees return each year!

Dr. Mooney will lead a comprehensive series focused on understanding the TS brain and Nonverbal Learning Disabilities (NLD). From recognizing how NLD affects learning, communication, and relationships, to identifying signs, navigating diagnosis, and implementing real-life supports. His sessions offer practical, insightful guidance tailored for individuals and families.

Newcomers can expect clear, foundational knowledge that helps make sense of everyday challenges and next steps.

Returning attendees know Dr. Mooney delivers meaningful, real-world strategies. This year will be no exception with fresh insights and continued guidance you can apply immediately.

Dr. Mooney is also known for his incredible willingness to give his time and energy to our community. He goes above and beyond to connect, answer questions, and support families wherever they are in their journey.

Consultations will be available, with sign-ups announced soon. These are always in high demand, so stay tuned!

We are grateful to have Dr. Mooney back and look forward to another impactful year.

Have you pre-ordered your conference shirt? The deadline for pre-order is June 15th! Pre-ordered shirts will be in your registration packet when you check-in.

Pro-Tip: We will have the shirts in the TSSUS Butterfly Store at the event, but to be sure you get the size and color you want, pre-order it with your registration.



Details about the youth program and the conference schedule on the conference webpage. We have a great program planned for this year! Be sure the check the webpage often.

Youth Program Details

Schedule-at-a-Glance

About Conference Scholarships

Because of your generosity, opportunity continues to open doors. Each donation you give does far more than fund a scholarship -

it sends a message of encouragement, belief, and belonging to members who might otherwise be unable to attend our conference.

Your support helps create moments of connection, learning, and inspiration that stay with recipients long after the event ends.

This year alone, your contributions allowed us to offer 20 scholarships out of 39 applicants, making a meaningful difference across the TS community.

We were proud to award four regional scholarships to people within driving distance, including one to a grandparent, and several to attendees who will be experiencing the conference for the very first time.

These stories represent growth, inclusion, and community - and they are only possible because of you. We are so grateful to our donors for making these experiences possible and for helping strengthen our community through your generosity.

Once you've completed the conference registration, be sure to join the 2026 Conference Facebook Group HERE.

April Featured My TS Story

I'm still Achieving My Dreams! - by LeShawn Kee

Hi, my name is LeShawn Kee and I was diagnosed at birth with Turner syndrome (TS).

I am a young African American that is now 52 years old. I have been to college and grad school in Virginia. It has not always been easy, being the short member of my family of tall brothers and a sister, but I look at myself as special.



I don't know many like me and hope that others will want to get to know me also. I want others to know you can live a full and happy life and achieve your dreams! I am still working on achieving my dreams! I am currently a teacher at the same high school I graduated from with honors. I know that TSSUS is big, but I hope to be able to connect soon!

The Turner Syndrome Society of the United States' website is vast and thorough. And still, we continually update it and add new resources in an effort to increase understanding of TS, and to make the condition easier to manage.

Recent additions:

• A new booklet for expectant parents who've received a possible Turner syndrome diagnosis for their unborn daughter entitled "Understanding a Turner Syndrome Diagnosis". You can find that HERE.

• A Turner Syndrome School Support Plan for Educators.This includes a fillable plan designed to support caregivers and healthcare providers with communicating and advocating for a student’s needs in the school environment. You can find that HERE.

We recently emailed a Research Update Newsletter. If you missed it, you can read it HERE.

Celebrating TSSUS Volunteers

TSSUS has a treasure trove of dedicated volunteers - beginning with our board of directors. Other notable volunteers who work on assigned projects regularly are Barb Flink, Emily Havrilak, Mary Brigham, and conference decorator Kristen McKinney.

Our conference volunteers are essential to pulling off the largest Turner syndrome event in the world, and we appreciate you all!

TSSUS Birthday Society Winner

We've added some great new merchandise to the TSSUS Butterfly Store! Check out our new family shirts - a great way to show your support for the Butterfly in your life.

We have designs for mom, dad, husband, grandma, grandpa, sister, brother, aunt, uncle, bestie, BFF, niece and nephew. There is a wide verity of color and style combinations to choose from.

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:

• April 18th - TSSUS West Michigan Support Group Lunch, Grandville, Michigan. Register HERE.

• April 25th - TSSUS Western Washington Support Group - Spring Get-Together. Register HERE.

• May 16th - TSSUS Western Washington Symposium, Seattle, Washington, Register HERE.

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

And on-line events, including:

• April 19th - Golden Butterflies (Ages 60+) Social Time on Zoom, Register HERE.

• April 19th - TSSUS Butterfly Book Club, Online. Register HERE.

• April 26th - 40-Somethings (Ages 40-49) Social Time on Zoom, Register HERE.

• April 26th - 50-Somethings (Ages 50-59) Social Time on Zoom, Register HERE.

• May 17th - Golden Butterflies (Ages 60+) Social Time on Zoom, Register HERE.

• June 14th - 20-Somethings (Ages 20-29) Social Time on Zoom, Register HERE.

• June 14th - 30-Somethings (Ages 30-39) Social Time on Zoom, Register HERE.

• June 21st - Golden Butterflies (Ages 60+) Social Time on Zoom, Register HERE.

• June 28th - 40-Somethings (Ages 40-49) Social Time on Zoom, Register HERE.

• June 28th - 50-Somethings (Ages 50-59) Social Time on Zoom, Register HERE.

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