TSSUS September 2022 Newsletter

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Greetings!

Is it Fall yet? Here in Houston, TX - the home of TSSUS - it's still in the 90's every day!

Here at the National office, we and the TSSUS board have been working on our new Strategic Plan for the next 3 years. This is a 6-month long project, culminating with an in-person board meeting in Houston this weekend where our dedicated board member volunteers travel here for a 2-day working board meeting.

Plans are underway for the 2023 TSSUS National Turner Syndrome Conference on July 14-16, 2023 in Houston, Texas. We are building a wonderful conference experience for you, and can't wait to see you in person after 3 long years. Did you know that TSSUS held the Conference for 33 consecutive years without interruption before the pandemic caused us to cancel 2020, and not schedule 2021 and 2022? The Conference is the highlight of our year, and this next one is going to be EPIC!

Last month, we held our newly-reimagined National TS Days virtual event and it was a great success! We'd like to thank all of the expert presenters who provided sessions, as well as thank everyone who attended. We've had some great feedback from attendees, and we hope you took as much away from the event as we did.

From time-to-time, TSSUS offers the summary version of the Clinical Practice Guidelines for the Care of Girls and Women free of charge to the TS community. For a very limited time, you can order this invaluable resource at no cost, and we will mail it directly to your home. We limit one copy per household. Take advantage of this opportunity while you can!

As always, TSSUS has a FULL calendar of events on our website, with a combination of in-person and virtual educational and social experiences available. Be sure to check our calendar regularly, because we add new events all of the time!

If you are not following TSSUS on Facebook, or have not yet joined our Facebook groups, you're missing out! We share events, updates, special opportunities, and the opportunity to connect with the TS community and make new friends. and We invite you to keep up with opportunities through email, our website calendar, and our Facebook page and groups. Cindy, Deborah, and I have been working on some great events coming up, as well as several projects simultaneously.

The TS Research Registry has more than 1,000 Participants!

Thank you to all of you who joined the registry since July! Think of your information as a key, a puzzle piece, or a brush stroke that brings us closer to learning more about TS.

We now have 1,087 people in the registry and 73 of them have genetic sequencing data available, too. It represents those born in the 1940’s through the 2020’s, and individuals from 29 countries (Argentina to South Africa). The Scientific Advisory Board will be updating the survey to make it more applicable to young children as well as adults. The next study will focus on identifying specific areas of parental supportive care needs that are most evident within the Turner syndrome community. Please join the registry to ensure your perspective is heard!

We appreciate you!

Becky Brown, National Director of Development & Communications

Turner Syndrome Society of the United States

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Order your free copy of

The Clinical Practice Guidelines for the

Care of Girls and Women with Turner Syndrome!

We often refer to the Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome (The Guidelines) as the operators manual for TS.

We encourage everyone who is touched by TS to read and follow these Guidelines. Sometimes the medical language can be difficult to process and understand, and we invite you to reach out to us with any questions or if you need clarification.

Please order your free copy for a very limited time. This offer closes on October 5, 2022.

Order Free Guidelines Here

TSSUS Virtual Chasing Butterflies Walk

Coming to a backyard, park, or driveway near you!

We're doing it again! The TSSUS Virtual Chasing Butterflies Walk is happening on Sunday, October 29, 2022 at 12:00 PM CST.

The Virtual TSSUS Chasing Butterflies Walk is back! Last year, all of you raised $33,000 through this fun, virtual walk experience, and we hope to top that with your support in 2022!

Once again, we've got some great prizes based on your individual fundraising efforts!

Raise $100 - free official 2022 walk t-shirt

Raise $250 - free official 2022 zippered hoodie

Raise $750 - free high-powered power bank phone charger

Raise $1,000 -free official high-quality embroidered gym / weekend bag

Each individual who raises $1,000 or more will receive ALL THE PRIZES!

The prizes accumulate - meaning if your raise $1,000 you'll receive all 4! These are premium, high-quality custom walk branded premiums you don't want to miss out on!

Get a head start and register as a walker, donate, and create your team page and include your personal story and photo, and get to steppin'!

We'll release more information and a day-of-event agenda details in the coming weeks, but you can get started today!

Raise $100+

Every individual who creates a fundraising page and raises $100 plus will receive a free official TSSUS 2022 Walk shirt.

You can also purchase a shirt in the TSSUS store.

Raise $250 - $499

Every individual who creates a fundraising page and raises $250 plus will receive a free official TSSUS 2022 walk shirt AND this top-quality walk-branded hoodie.

Raise $500 - $999

Every individual who creates a fundraising page and raises $500 - $999 will receive a free official TSSUS 2022 walk shirt, the walk-branded hoodie, and this useful and beautiful high-end power bank phone charger.

Raise $1000+

Every individual who creates a fundraising page and raises $250 plus will receive a free official TSSUS 2022 walk shirt, the walk-branded hoodie, the power bank phone charger, and this exclusive embroidered walk-branded weekender / gym bag.

Order 2022 Walk Shirt Here

TSSUS Volunteers Present to Medical Students

For several years, this groups of TSSUS dedicated volunteers have been sharing their knowledge and experience about Turner syndrome with endocrinology medical students at UT Southwestern Medical School in Dallas, Texas. They are invited back year-after-year, and collaborations like this briefing can lead to a better understanding of TS, and earlier diagnoses of the condition by tomorrow's physicians.

Thank you for everything you do to advance awareness! Pictured are: Stephanie Wieberg Thompson , Dorothy Baume, LaShelle Jennings, and Mary Greenberg.

Ellie's News Story

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The 33rd Annual

TSSUS National Turner Syndrome Conference

July 14-16, 2023, Houston, Texas

We are so excited to announce that the 33rd Annual TSSUS National Turner Syndrome Conference will be held in Houston, Texas from July 14 -16, 2023, at the beautiful Westin Galleria Houston. The Westin Galleria Houston Hotel is located within the largest shopping center in Texas, the Houston Galleria. The hotel is 17 miles from Hobby Airport (HOU) and 27 miles from Bush Intercontinental Airport (IAH).

The hotel is connected to the Galleria, where you'll find an elaborate food court and some of the best shopping in the country. From luxury brands to fast fashion department stores, the Galleria has something for everyone - there's even a world-famous ice-skating rink!

Hotel reservation information, topics, and speakers will all be announced in future newsletters.

Houston is home to the National office of the Turner Syndrome Society of the United States, and yet, we've never hosted a TSSUS conference here. In this, our 35th Anniversary year, we felt it fitting to bring the conference home.

Registration for the Conference will open in early January, 2023, and more information will be shared in the coming months.

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TSSUS Turner Syndrome Research Registry (TSRR)

The Turner Syndrome Research Registry Report

TSSUS would like to extend a huge thank you to the 8 members of the TSSUS Scientific Advisory Board for meeting each month and collaborating to advance TS research through the Turner Syndrome Research Registry (TSRR). On April 17, 2022, more than 700 registry participants were sent an updated health survey to fill out with their current health information.

Have you ever thought or said, "There needs to be more TS research?" If you have, are you yourself contributing to TS research by entering you or your minor child's information in the TSRR? This is your opportunity to contribute and advance TS research, and it will only take about 20 minutes to complete.

Please learn about and join the registry and contribute to TS research. The Scientific Advisory Board members fully review and approve each research application and require researchers to share the data they obtain with other TS researchers. We value your time, and you are allowed to opt out at any time but hope you don’t because each person’s health information supports the whole process.

A publication about TS and the significance of the bicuspid aortic valve was released weeks ago that was reliant upon TSRR data, and the registry is currently supporting a study about learning and behavior in TS.

Last month, whole exome genome sequences were added to more than 150 participant registry records collected from a cardiology study by Oregon Health Science University (Cheryl Maslen, PhD and Michael Silberbach, MD- researchers).

Registry applications and information about the registry is available to researchers interested in Turner syndrome who wish to apply to access data from the 1000 records within it.

There does need to be more research on Turner syndrome, absolutely! But it's going to take your participation to drive things forward. Please consider supporting current and future TS research by becoming a part of this potentially monumental endeavor.

Registry applications and information about the registry is available to researchers interested in Turner syndrome and wishing to apply to access data from the 1000 records within the registry.

Learn More - TSRR Registry

TSSUS Scientific Advisory Board

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I Define What Turner Syndrome Is - by Caitlin Sullivan

Hi all! My name is Caitlin Sullivan, and I am a 26-year-old woman with Turner syndrome (TS) from Massachusetts. I can honestly say I love having TS. Having Turner syndrome has given me some of the greatest blessings in my life, including life-long friendships, an amazing support system, and a community I truly feel connected to.

I have also learned through the years that Turner syndrome does not define me; I define what TS is. Yes, TS has a medical definition that people can Google search. One will find various definitions with medical jargon that makes absolutely no sense and can scare people. If you ask me to define Turner Syndrome, I will say that it is a genetic disorder that happens to make up some of the most determined, caring, kindhearted, empathetic, and stubborn group of individuals you will ever meet.

My experience with this condition and those characteristics that I used in my definition are what inspired me to become a nurse. I knew from a young age that I wanted to help people because of my experiences with nurses and doctors in the hospital. I wanted to be able to provide comfort, quality care, compassion, and a listening ear to patients and families. After many late nights, lots of studying, copious amounts of iced teas, and countless frantic phone calls home saying I could not continue this nursing school thing, I made it. When deciding what specialty of nursing to go into, I made a list of my strengths. Those would be that I am determined, caring, kindhearted, empathetic, and stubborn.

After doing research on what specialties of nursing played into these strengths, I decided to go into hospice care. I am an on-call hospice nurse, which means I am the 911 of hospice. I always tell families, “Instead of calling 911, you call me”. I love my job. My favorite part of my job is being able to walk into a patients’ home or facility, assess the situation, and see what I can do to make my patients more comfortable. I love being able to listen to the families’ triumphs and struggles while navigating the world of hospice while guiding and supporting them through their journey. So, here’s to Turner Syndrome Awareness Month. Everyone stay safe and healthy!

Submit Your Own TS Story Here

TSSUS Offers a Huge Array of Virtual and

In-Person Events

Our calendar is literally overflowing with virtual events and opportunities to both learn and socialize, and now you'll begin to see in-person events coming back. All of our events require pre-registration, so check the calendar often!

Be sure to check the Events Calendar on our website regularly! We add new events every week!

Here are our upcoming events you can participate in. Pre-registration is required for all local and virtual events.

Generational Zoom Rooms Happening THIS Sunday!

TSSUS Pennsylvania Virtual Meet and Greet

Saturday, October 15, 2022

2:00pm-3:00pm EST

We hope you will join us to meet others in the PA area. This zoom opportunity is open to anyone in the local community to have the chance to meet others in the area.