The anticipation is over! Put your hands in the air, close your eyes, feel the wind in your face, feel the click, click, click as the roller coaster climbs and then the long wait disappears as we rush toward exciting times ahead.
The 33rd Annual TSSUS National Turner Syndrome Conference will finally take place in Houston, Texas from July 14-16, 2023. We are so excited, and you’ll find the details within the newsletter below. We are disappointed that we had to skip Phoenix, AZ and look forward to coordinating an event with the Arizona TSSUS support group in the future.
We want to thank the TS community for making history over the last few years as we replaced in-person events with online opportunities. In that same vein, on August 27-28th we will host a TSSUS National TS Days online. The event will be similar to a virtual conference but without the associated expense. The cost of the online TS Days will be $20. We will offer scholarships to those with a financial need so that anyone in the TS community who would like to attend has the opportunity to learn about TS and have some TS fun from their home or a library. The online TSSUS TS Day will include expert speakers presenting on a specific topic for 15-20 minutes followed by 5–10-minutes of Q&A.
Of course, a TSSUS event wouldn’t be the same without some fun, including a talent show that allows anyone with TS to submit a video of themselves doing something they love. Most exciting is that ALL talents can be included - not just those limited to a stage! We are also looking into having a Karaoke party! Refer to future newsletters and the official TSSUS Facebook page as we release new information about all of the online opportunities.
Check out the TSSUS Event Calendar on the website regularly as we are adding new and exciting events weekly, including in-person meetings and TSSUS Chasing Butterflies Walks in some areas!
We are continuously adding new information to the TSSUS website.
- We've added a chat feature where you can instantly chat with Becky if you have a question or need help.
New Videos added to the website:
- Transitioning from pediatric to adult care
- Anxiety related to children with TS
- Anxiety related to adults with TS
- Managing anxiety in TS in general
Videos added to the professional provider’s page:
- Psychosocial aspects of TS
- Where to refer a girl who may have TS
- Importance of diagnosing TS
- Why screening for TS is important
We hope you have plans to create sweet memories this summer and remember to book your doctors’ appointments for the year. If you are unsure about what appointments you might need to make at what age, please refer to the Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome at turnersyndrome.org.
Have a great beginning of Summer!
Cindy Scurlock, President/CEO
Turner Syndrome Society of the United States
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We are excited to announce our biggest virtual event EVER! The National TSSUS TS Days Virtual Experience is happening on August 27-28, 2022, and it's all on Zoom! This event will be our version of a virtual conference, and it will be affordable enough for everyone to attend.
Tickets will go on sale soon and will be just $20. TSSUS will offer scholarships to those who have a financial need so no one if left out.
This is a unique opportunity for you to get just a taste of what a TSSUS National Turner Syndrome Conference is like, and our hope is that you come away from it with a better understanding of the condition, some new friendships, and a renewed dedication to preserving your health and well-being.
We're planning an amazing interactive event that will be both educational, informative, and fun for all ages. You'll have the opportunity to submit a 3-minute video for the virtual talent show and, hopefully, to participate in the TSSUS virtual karaoke event! We're going to learn AND we're going to have some fun!
While we realize the foundation of the TSSUS conference experience is getting together, in-person, and meeting old friends or making new ones, we feel this is the next best thing.
We'll share more details with you here as we finalize them.
Some frequently asked questions (FAQs)
Why isn't there an in-person conference this year (2022)?
TSSUS has to plan each conference almost a year in advance. We could not accurately predict the what the status of the worldwide pandemic would be in the summer of 2022 last year.
Will there be an in-person conference in 2023?
Yes! The 2023 TSSUS National Turner Syndrome Conference will be held in Houston, TX from July 14-16, 2023.
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Have You Completed the TSSUS Survey? |
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Have you completed and returned the TSSUS Virtual Event and Conference Survey that was sent out last week by email? If not, please take a moment to complete the survey and return it to us. We value your input and opinion. Check your email! |
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A Call for Expert Sessions Presenters |
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Call for virtual session presenters and conference presenters! If you are a professional with expertise in Turner syndrome or related topics of benefit to the TS community and might be interested in presenting a virtual session throughout the year or presenting at the 2023 in-person conference in Houston, Texas, please complete that section of the survey or respond here. Please share your area of expertise and the subject matter you might like to present, as well as your complete contact information and professional affiliation. |
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The 33rd Annual
TSSUS National Turner Syndrome Conference
July 14-16, 2023, Houston, Texas
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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 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.
Houston covers 665 square miles and is home to:
- The Turner Syndrome Society of the United States
- The Texas Medical Center - the largest medical center in the world
- a Turner syndrome clinic that serves both children and adults
- NASA and the Johnson Space Center
- The Houston Astros, Texans, Rockets, Dynamos, Dash
Houston is the 4th largest city in the United States, and is the most ethnically diverse metropolitan area in the country. At least 145 languages are spoken by city residents. Houston is also home to the most diverse culinary scene in the USA.
If you're a "foodie", you'll enjoy exploring the amazing culinary scene Houston has to offer. If you enjoy museums, Houston has a museum district that is home to:
- The Houston Museum of Natural History which includes the Burke Baker Planetarium
- The Museum of Fine Arts, Houston
- Children's Museum, Houston
- The Menil Collection
- Contemporary Arts Museum, Houston
- The Health Museum
- The Holocaust Museum, Houston
- Buffalo Soldiers National Museum
- Houston Center for Contemporary Craft
- Houston Museum of African American Culture
- Czech Center Museum
- Art Car Museum
- Asia Society Texas Center
- Space Center Houston
- National Museum of Funeral History
- Lone Star Flight Museum
- Houston Fire Museum
- Cockrell Butterfly Center at the Museum of Natural History
- The Rothko Chapel
. . . and so many more!
Expert health providers will fill the conference educational sessions with knowledge and provide the much-anticipated Healthy Heart Screenings. More than 130 echocardiograms were performed at no cost to those with Turner syndrome at the 2019 TSSUS conference.
We know it will be hot and humid; it’s July in the south, but it will be worth it, and the hotel is air conditioned! There is a reason Houston is the 4th most populous city in the United States because there is great food, friendly people, and much to see and do.
We're working on a theme for the 2023 Conference. Houston has a vibrant Hispanic population and culture (44% of Houstonians are Latinx), is home to the largest rodeo in the world - The Houston Livestock Show and Rodeo, and is home to NASA.
These are the themes we're considering:
Which one sounds more fun to you? Share your ideas and thoughts with us. Just respond to this email!
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TSSUS Turner Syndrome Research Registry (TSRR) |
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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).
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.
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Special Recognition and Remembrance |
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Earlier this year, long-time TSSUS supporter and TS Parent Advocate, Natalie Brobin, passed away. In life, Natalie touched the lives of many people in our community and in the rare disease community by being that person whom you could always call when you needed a word of encouragement or someone to help you advocate for what you or your child needed. She was a friend to many and she was much loved.
Upon Natalie's death, the Turner Syndrome Society of the United States received a posthumous donation from her estate of $60,000. This is the single largest individual gift our organization has ever received.
Natalie chose to make this planned gift or legacy gift long before she ever thought her time on earth would come to a close. We are grateful she chose to honor TSSUS by making the organization a forever part of her legacy. Thank you, Natalie.
For information of planned giving, please reach out to Becky Brown at becky@turnersyndrome.org or 832.465.9388.
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TSSUS Offers a Huge Array of Virtual and
In-Person Events
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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.
Saturday, June 16, 2022
10:00am - 2:00pm PST
Marine Park, 4500 SE Columbia Way, Vancouver, WA 98661
The TSSUS Chasing Butterflies Walk program is the national, signature fundraising event for the Turner Syndrome Society of the United States. Walks create a perfect opportunity for people in the local TS community, their friends, families, and supporters from the business community to come together for TS.
Sunday, June 26, 2022
2:00pm-3:00pm CDT
Book Selection: Ariadne by Jennifer Saint.
There will be time for socializing after the book discussion.
Sunday, June 26, 2022
3:30pm-4:30pm CDT
Virtual opportunity for adults with TS 60-ish years old and up to connect with each other. Meet some of our long-time golden butterflies and walk away with lifelong friendships!
Saturday, July 9, 2022
2:00pm-3:00pm CDT
Virtual opportunity for those in the Central Washington state area who want to connect with each other and walk away with lifelong friendships!
Sunday, July 10, 2022
2:00pm-5:00pm EST
Come out and join us for a picnic-style gathering. Lunch and drinks will be provided. Please bring a dessert to share. We are looking forward to meeting everyone soon!
There is a park vehicle fee that you will need to pay to enter the park. Cost for parking is $20 for a day pass or $40 for an annual pass.
Saturday, July 16, 2022
1:00pm-3:00pm CDT
We hope you will join us and meet others from the Iowa area. This event is in person, and we can't wait to see you there!
Sunday, July 17, 2022
2:00pm-3:00pm CDT
Virtual opportunity for adults with TS 60-ish years old and up to connect with each other. Meet some of our long-time golden butterflies and walk away with lifelong friendships!
Sunday, July 24, 2022
12:00pm-1:00pm CDT
Are you in your 20's and want to connect with others? This call is for you!
A big part of what we do at the Turner Syndrome Society of the United States (TSSUS) is connect and support people with Turner syndrome (TS) with others who are going through similar situations. Sometimes, just having that one friend who totally “gets” you can mean so much! We hope you will join us!
Sunday, July 24, 2022
1:30pm-2:30pm CDT
Are you in your 30's and want to connect with others? This call is for you!
A big part of what we do at the Turner Syndrome Society of the United States (TSSUS) is connect and support people with Turner syndrome (TS) with others who are going through similar situations. Sometimes, just having that one friend who totally “gets” you can mean so much! We hope you will join us!
Sunday, July 24, 2022
3:00pm-4:00pm CDT
Are you in your 40's and want to connect with others? This call is for you!
A big part of what we do at the Turner Syndrome Society of the United States (TSSUS) is connect and support people with Turner syndrome (TS) with others who are going through similar situations. Sometimes, just having that one friend who totally “gets” you can mean so much! We hope you will join us!
Sunday, July 24, 2022
4:30pm-5:30pm CDT
Are you in your 50's and want to connect with others? This call is for you!
A big part of what we do at the Turner Syndrome Society of the United States (TSSUS) is connect and support people with Turner syndrome (TS) with others who are going through similar situations. Sometimes, just having that one friend who totally “gets” you can mean so much! We hope you will join us!
Saturday, July 30, 2022
9:00am-12:00pm PST
The TSSUS Chasing Butterflies Walk program is the national, signature fundraising event for the Turner Syndrome Society of the United States. They create a perfect opportunity for people in local the TS community, their friends, families, and supporters from the business community to come together for TS.
Saturday, August 20, 2022
3:00pm-4:00pm EST
We hope you will join us to meet others in the New York area. This zoom opportunity is open to anyone in the local community. Come make some new friends and catch up with old ones.
Sunday, September 18, 2022
2:00pm-3:00pm CDT
Virtual opportunity for adults with TS 60-ish years old and up to connect with each other. Meet some of our long-time golden butterflies and walk away with lifelong friendships!
Sunday, September 25, 2022
2:00pm-3:00pm CDT
We would love to see your pet(s). We can't wait to learn your pets name, where you got your pet from, and what is special about your pet.
Saturday, October 1, 2022
9:00am - 1:00pm EST
The TSSUS Chasing Butterflies Walk program is the national, signature fundraising event for the Turner Syndrome Society of the United States. They create a perfect opportunity for people in the local TS community, their friends, families, and supporters from the business community to come together for TS.
Saturday, June 16, 2022
90:00am - 12:30pm CDT
The TSSUS Chasing Butterflies Walk program is the national, signature fundraising event for the Turner Syndrome Society of the United States. They create a perfect opportunity for people in the local TS community, their friends, families, and supporters from the business community to come together for TS.
This year, the home-office walk will be both in person and on-line! If you live within travel distance to the Houston area, we would love to see you in person. If you are from a part of the country where there is no local TSSUS Chasing Butterflies Walk, we hope you will join us on-line and help make this the most successful TSSUS walk fundraising event ever! Everyone is invited to take part in this fun event.
If you plan to attend in person, we are looking for volunteers in various ways. Please take a moment to sign up to help out by clicking on the link below:
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Walk Training and Information ZOOM Meeting |
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Would you like to find out more about how to successfully host a TSSUS Chasing Butterflies Awareness and Fundraising Walk in your local area? We are always looking for people who would like to work with us to coordinate a local event in your community.
Are you a current or past walk coordinator? We'd love you to join us to share you tips and suggestions with others who may be wanting to host a walk.
This Zoom meeting will be equal parts training, question and answer, and FUN! We invite
everyone who is interested in the walk program to join us.
Date: Saturday, July 30, 2022
Time: 2:00pm - 3pm
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Updates on Assisted Reproductive Therapy for Pregnancy in Turner Syndrome
In this recently published white paper, TS experts highlight new techniques to achieve pregnancy in women with Turner syndrome, while at the same time reminding readers about the need for psychological and health screenings.
Read Summary Here
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Video - Anxiety, Depression, and OCD |
In this video presentation from a TSSUS National Turner Syndrome Conference, Jessica C. Kichler, PhD, CDE, discuses Managing Anxiety, Depression, and OCD in Adults with Turner Syndrome. |
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The TSSUS Butterfly Society |
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TSSUS is looking for 100 new Butterfly Society monthly supporters to join this exclusive giving society. Will you be one of the 100?
As we emerge from the worldwide pandemic and life has for the most part returned to pre-Covid days, the Turner Syndrome Society of the United States has come through the crisis in a solid position.
In large part because of our most dedicated and committed supporters in the TSSUS Butterfly Society, we have been able to maintain and redefine programs and services throughout the shutdowns and changes to in-person meetings and events.
Let's take a moment to celebrate those of you who have seen the value and importance of becoming a recurring month-after-month supporter of TSSUS through the Butterfly Society program! It was difficult these last couple of years, and it would have been so much more so without the ongoing and faithful support of or hero-donors both in the Butterfly Society and in general. We simply could not have done these last 2.5 years without your support, and we are grateful for your continued confidence and commitment.
As inflation continues to rise and the threat of a full-blown recession looms, TSSUS is in a good position financially as we continue to navigate through more uncertain times. We continue to rely on our monthly donors in the Butterfly Society to carry us through.
What Is the Butterfly Society?
The TSSUS Butterfly Society in an exclusive monthly giving program where people like you sign up to give a monthly, recurring donation. This means each month through bank withdrawal or credit card transaction, your donation to TSSUS is automatically made on the same day each month.
We launched this program in July 2017, and we now have approximately 460 supporters enrolled.
Are you a member of TSSUS, but perhaps you've never made a financial donation? Do you know that with just $10 a month, you will have donated $120 at the end of the year? Donating each month allows you to make a more impactful gift over time.
A free individual TSSUS membership is included at the $10/month giving level while you are an active participant! You can also upgrade your free Butterfly Society individual membership to a family membership for just $20.
Are you someone who attends TSSUS events, follows us on social media, and benefits from the webpage and resources we provide and didn't think you could ever be a philanthropist? This program allows most to participate.
We understand that not everyone can participate, and you are just as an important part of the TS community as those who can.
We also recognize many of you do have the ability to support our work financially, and we appeal to you to do that now if you're inclined and able.
For those of you who are Butterfly Society supporters - you are our heroes! You show us month-after-month that you value the mission of the Turner Syndrome Society of the United States, and that you are a partner in a secure and long-lasting future for the Society.
If you have supported the Butterfly Society in the past but are not currently enrolled, we encourage you to reactivate your support. You can do that by calling Becky Brown at 832-465-9388 or clicking the "Join the Butterfly Society Today" button below. Our goal is to reactivate 100 past supporters by the end of September.
Please take a moment to help us celebrate our current Butterfly Society supporters and consider becoming one yourself. For less than it costs to have Door Dash bring your favorite pizza, you can invest in the organization whose focus is to better the lives of all those with TS and their families through education, research, and support.
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Get This Exclusive Butterfly Society
T-shirt Free!
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Our goal is to have 1,000 supporters in the program by the end of 2023, so we need your support!
For a limited time, we will be offering the new exclusive TSSUS Butterfly Society supporter t-shirt to all monthly donors who:
- Are presently giving at the $40/ month level or above
- Current donors who increase their monthly gift to $40/month or above
- New donors who give at $40/month or above
- Returning donors who re-commit at $40/month or above
Of course, all TSSUS Butterfly Society donors who give at the $10/month level will continue to receive a free individual annual membership as long as their support is active.
For more information or to join the TSSUS Butterfly Society, please click the button below, or contact:
Becky Brown, National Director of Development & Communications
Mobile: 832.465.9388
becky@turnersyndrome.org
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TSSUS New Generations Chat's are a HUGE Hit! |
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Last month, we launched our new Generational Zoom Chats, and you loved them! These strictly social Zoom Rooms allow people with TS of similar ages to come together together to chat, make new friends, share experiences, and support each other.
If you check the events listings above and the official TSSUS Event Calendar on the TSSUS webpage, you'll find more information and the registration links on these exciting new FREE Zoom get-togethers.
If you'd haven't signed up for one yet, please do! They're free, and everyone is welcoming and nice! We hope to see you there.
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TSSUS Volunteers Making an Impact |
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TSSUS North Texas Support Group volunteers (pictured left to right: LaShelle Jennings, Mary Greenberg, Dorothy Baume, and Harper Prince in front) host a fundraising event at the local Kendra Scott store where the retailer offered a donation of 20% of in-store and on-line sales to the Turner Syndrome Society of the United States.
Kendra Scott offers this program in stores across the country, and volunteers in several cities have hosted these events.
We at TSSUS appreciate the kind generosity of the Kendra Scott Company, as well as the ongoing dedication and support of our North Texas volunteers! Thank you, ladies!
If you would like to host an in-store fundraising event at your local Kendra Scott store, please contact Becky Brown at 832.465.9388, or email becky@turnersyndrome.org
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Read LOTS of TS Stories on our Facebook page and stay up-to-the-minute on what's happening! |
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If you aren't participating in our Facebook Groups, you're missing out! These are private groups and require that you answer two questions upon requesting to join. You now have the ability to submit sensitive questions anonymously in private Facebook groups.
Please be sure to read the group rules and to have a familiarity with Facebook Community Guidelines when you participate.
We hope to see in the groups!
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We are so grateful for each and every one of you! Thank you for taking the time to read our e-newsletter, and for participating in our online virtual events and donor initiatives. Please take a moment to consider joining the TSSUS Butterfly Society as a monthly donor. If you have something you'd like us to consider featuring here, please share it!
All the best!
Becky Brown, National Director of Development & Communications
Turner Syndrome Society of the United States
Toll Free: 800.365.9944 Mobile: 832.465.9388
Email: becky@turnersyndrome.org
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