We want to see YOU in Houston!

Greetings!

We have some Very. Important. Announcements. in this email, so please make sure you click on "view as webpage to see full message" above your name.

Whew doggie! I tell you - Cindy, Deborah, and I have been jumping through hoops, mapping out the hotel, registering people, designing t-shirts, scheduling speakers and activities, coordinating volunteers, and planning the best ever TSSUS National Turner Syndrome Conference for you!

We are getting so close. The Conference is only 2 months away! Will we see you there? Have you registered or made your hotel reservations yet? Please complete your registration and hotel reservation soon so we can have a solid idea of how many of you to plan for!

  • The TSSUS Healthy Heart Project is returning this year, and you can register to participate and reserve your time slot starting now. VERY detailed instructions are below under the Healthy Heart Study Section. Only those who are signed up in the TSSUS Turner Syndrome Research Registry will be screened. Read more below.

  • The official conference t-shirt will be available for pre-sale starting now! In order to guarantee you get the sizes you need, please pre-order by June 15th.

  • The last day to make hotel reservations using the discounted TSSUS room block rate is June 21st. After which, the room rate increases considerably.

  • Don't forget to register for the optional pre- and post-conference activities! We're decorating cowboy hats ($29) Thursday evening, and taking a bus trip to NASA ($69) in Houston Sunday afternoon. Pre-registration is required.

  • It's not too late to become a monthly donor in the TSSUS Butterfly Society so that you will receive a ticket to the exclusive Butterfly Society V.I.P. Reception in the Monarch Room Saturday overlooking the Houston skyline.

  • If you have a child who will be in the Youth Program, please fill out the permission slip / emergency contact form as soon as possible.

  • Personal one-on-one consultantions with Dr. Dean Mooney - we will be scheduling these soon. Dr. Mooney will spend about 15 minutes with you in a private conversation answering your questions and offering insight on challenges and strategies related to nonverbal learning disorder and executive functioning deficits.

  • Some of you have asked about the dress code for the Wild West Dance and Karaoke Party Saturday night- it's whatever you want it to be! You can get all gussied up in your western duds, dress real fancy, or come as you are casual.

  • Conference key volunteers - please email us your t-shirt size.

You'll find details for all of these things below under the appropriate section. Of course, if you have any questions, just email or call us - we're happy to help. We can't wait to see you all in Houston in July!

You're the best,


Becky Brown
National Director of Development and Communications


Turner Syndrome Society of the United States
11250 West Road, Suite G
Houston, TX 77065

Office: 800-365-9944 or Mobile: 832-465-9388
Make a Healthy Heart Study Appointment
The Healthy Heart Study is returning to the TSSUS Conference this year. For the first time, all participants seeking to participate MUST be signed up in the TSSUS Turner Syndrome Research Registry (TSRR). You can add yourself or your child to the Registry by following the link below. If you have participated in a Healthy Heart Screening at previous conferences, the study investigators encourage you to participate again this year.

Healthy Heart Echocardiogram Screenings
Study Investigators: Michael Silberbach MD, of Oregon Health Science University, Emilio Quezada Liuti, MD, of the University of California San Francisco and Siddharth Prakash MD, of UT Health
 
Eligibility: Individuals with TS of all ages who have joined the TS Research Registry, and a special request for those who received heart screening(s) at the conference in the past.
 
Purpose: Individuals with TS may be born with abnormalities of the heart and blood vessels and have a risk of developing enlargement of the aorta (close to where it comes out of the heart). The purpose of this study is to check the structure of the heart and to measure the size of the aorta in order to learn about its normal growth pattern in individuals with TS. The screening takes about 30 minutes as you’ll be weighed, have your blood pressure taken, get an electrocardiogram (EKG), and receive an ultrasound of your heart focused on the aorta. The EKG is a test that records the electrical activity of your heart through small electrode patches that a technician attaches to the skin of your chest, arms, and legs. The ultrasound test uses a handheld roller over your chest to see internal images. We encourage you to participate, even if you were screened at previous conferences. The combined information allows us to see how your aorta may have grown over time. We are unable to share the screening results with you for medical purposes but will alert you if there are concerns.
 
Make an appointment: Contact Deborah at 832-912-6006 or 800-365-9944 with an appointment time in mind. Appointments will be made every 15 minutes Friday and Saturday from 9:00 am- 5:00 pm. You will need to be a participant of the TS Research Registry, so please join soon after making your appointment if you have not already signed up online and filled out the medical survey. On June 1, Deborah will email those with appointments the Study Consent Form. If you have difficulty signing up for the registry, please contact Deborah and let her know, as we don’t want to cancel anyone’s appointment because we don’t have the required information for the study.

Pre-Order Your Official Conference T-Shirt
As of right now, we are taking pre-orders for the official TSSUS National Turner Syndrome Conference t-shirt. Isn't it a beauty? This shirt comes in a full range of sizes from Child XS to Adult 4XL. These shirts will not be shipped to you before the conference. We will have a limited supply of conference shirts for sale in the Butterfly Store, but in order to guarantee we have your size(s), it's best to order in advance!

Here's how this will work:

  • Order your shirts by using the order shirts button.
  • Your shirt(s) will be given to you at registration when you check in
  • Wear your shirt for a group photo on Saturday!
  • If you are an approved conference key volunteer, please email your shirt size to [email protected]. Include your name, shirt size, and your assigned volunteer position, date, and time.
Make Hotel Reservations by June 21st
In order to take advantage of the TSSUS discounted hotel room block, you need to make your hotel reservation on or before June 21st. We are at 83% capacity, so please reserve your rooms as soon as you can!

The discount won't apply unless you use the reservation link on the TSSUS Conference webpage. The Houston Westin Galleria Hotel is the one at 5060 West Alabama St, Houston, TX 77056. Make sure you've made reservations at the right hotel.
TSSUS Conference Schedule-at-a-Glance
Now Published
When we say we have a great program planned for you this year, we mean we have a GREAT program planned! You'll find some of the world's leading experts on Turner syndrome on this schedule.

We've included opportunities to attend sessions and further your knowledge of TS, to participate in social time and community-building, and several opportunities to participate in question and answer sessions with the experts and with panel members who have TS.

For the full schedule, go to the TSSUS Conference webpage, or download a printable schedule. More details will be added as they
are finalized.
The TSSUS Conference Youth Program
The TSSUS Conference Youth Program is going to be so much fun this year. We have many returning youth leader favorites and a few new faces. The kids will be busy! The Youth Group Schedule-at-a-Glance will be posted on the TSSUS Conference website tomorrow.

If you have a child enrolled in the Youth Program, please fill out the permission / emergency contact form previous to the conference. There is a link below. Better yet, till it our now so that we don't have to bug you!

Download and print it here, and check it out for updates on the TSSUS Conference webpage.
Optional Pre- and Post-Conference Activities
Registration is NOW OPEN for the NASA trip at the TSSUS Conference. This post-conference event is offered on Sunday, July 16th from 1:00 PM to 6:00 PM. We will travel by luxury bus to NASA/Johnson Space Center.

The trip should take almost an hour each way, with 3-3.5 hours to explore. The cost is $69 per person. There is space for 53 people per bus, so sign up early!
Registration is NOW OPEN for the "Create Your Own Cowboy Hat" activity at the TSSUS Conference. This pre-conference event happens on THURSDAY, July 13th from 6:30PM to 8:00PM and is $29 per person.

Come get ready to get your YEEHAW on so you can show off your new custom hat at the Wild West Party Saturday Night!
Be a Part of the Exclusive Butterfly Society Reception
If you are a supporter of the TSSUS Butterfly Society Monthly Giving Program, we thank you! If you'll be attending the TSSUS Conference in Houston in July, please email your t-shirt size to [email protected].

If you aren't yet a monthly Butterfly Society supporter, you can join today!
As always, thank you for sharing your lives and experiences with us. We appreciate the opportunity to be of service to the TS community we love so much. We can't wait to see you all again in July!

Cindy, Deborah, and Becky

The Turner Syndrome Society of the United States
11250 West Road, Suite G
Houston, TX 77065

Office Phone: 832-912-6006
Mobile: 832.465.9388