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Hello Becky,

We are just two months away from the biggest gathering in the TS community - the TSSUS Conference! Join us in Portland, Oregon for the 34^th Annual TSSUS National Turner Syndrome Conference on July 18-19, 2025.

We sent out an email to all registered conference attendees last week with information and links to register for the Healthy Heart Project and private one-on-one conversations with Dr. Dean Mooney. The Dr. Mooney consultations are fully booked. The Healthy Heart screenings are still available for Friday and Saturday.

We've also added a fun and optional activity for Thursday evening - a Friendship Bracelet Making Class! You'll find more information about that and a registration link in this newsletter below.

If you’re attending the TSSUS Conference, we look forward to seeing you at the exclusive Butterfly Society V.I.P. Reception Friday night from 7:30 PM to 9:00 PM where you’ll receive a special gift and enjoy cocktails and a dessert bar. If you'd like to attend the exclusive TSSUS V.I.P. Butterfly Society and Major Donor Reception Friday evening at the Conference but are not yet a Butterfly Society monthly donor, please reach out to me at becky@turnersyndrome.org or 832.465.9388 and I can help get you started.

The TSSUS Monthly Generational Zoom Chats are reaching so many people. We started these a few years ago, and new people are joining in every month. Please make sure you sign up for one - they can be just the support you might need.

One of the most perplexing things people with TS can deal with on a daily basis are issues related to Nonverbal Learning Disability (NLD). As a clinician, Dr. Dean Mooney has a keen understanding of how NLD can impact those with TS. In his upcoming TSSUS Zoom 3-part series. Dr. Mooney will help you understand why you (or your child) do the things you do and suggest strategies you can start using immediately to help.

Please take advantage of this free resource and enjoy some social time, make a new friend, and gain understanding about Turner syndrome. Find an event in your area or a virtual event that suits you HERE.

We can't wait to see many of you in Portland in July! Coming together and spending time with all of you at the TSSUS Conference is the best part of our year As always, we love to hear from you! If you have a story to share, a suggestion, or feedback, please respond to this email!

Thanks for being YOU!

Becky Brown

National Director of Development & Communications

Meet Dr. Priya Winston

We have some amazing people in the TS community - those that go above and beyond to serve and dedicate their life's work to helping others. Priya Winston Ph.D, LMSW, Director of Curriculum and Clinical Excellence, Arc Lexington Transitions Program, is one such person. She recently received the Emerging Professional Award from Women of Excellence.

As a woman with Turner syndrome, she decided early on to work with people who are neurodivergent in a professional capacity. Take a few moment to learn about her and her work.

Dr. Winston's mother, Shalona Winston, shared this video with us in hopes that it might inspire others.

Watch the video HERE.



I'm Confidently Facing My Future Now

by Naveh Riles

Hi, my name is Naveh. I am 28 years old. I was diagnosed with TS when I was born. From the beginning, I dealt with some health issues. I had to have two surgeries; one on my heart and one on my kidney. I had a coarctation of the sparta and a cyst on one of my kidneys. The doctors didn’t have an opening to operate on my heart and gave me limited time to live.

My parents prayed and then doctors came and told my parents they had an opening to operate. Later, I had to have my kidney removed. Both were fine when I was an infant. I have been fortunate to be healthy since.

As a teenager, I struggled more emotionally and with my self-image. My struggles with my self-image did not start until I hit the age of puberty. All of my friends’ bodies were changing and mine wasn’t. Because I was still focused on just being a kid, it didn’t affect me as much, and I’m grateful for that.

I was very aware that I was different. I struggled with friendships and was more self-conscious than others. Now as an adult, I feel like TS is taking more of a forefront in my life. I am 28 years old and marriage and children are constantly on my mind. I’ve known for a while that I was not going to be able to get pregnant, but now that I am at the age where these things happen, I am thinking about it a lot.

I’m always thinking about my future and what my options are. I’ve never been in a relationship either, so I feel like I’m behind. I wonder if I will ever be able to meet someone who will accept me and everything that comes with the TS.

Although TS has impacted my health, fertility, and my social interactions, I am pretty independent now and am lucky enough to have gone to college and grad school! I am so much more confident in myself and am thriving overall.



My goal is to be a perinatal social worker and work with pregnant women and babies. I have struggled with my self-image/esteem, but I am more sure of myself and see TS now as a strength and not a hinderance to meet my needs and reach my goals.

To read more "My TS Stories", visit the TSSUS Blog HERE. If you'd like to submit your own story, you can do that HERE.

We welcome stories from people with TS of all ages, from parents or grandparents, and from siblings of someone with TS.

Can you believe the TSSUS National Turner Syndrome Conference is just 2 months away! The countdown has officially begun. You still have time to register and make your hotel reservations. You don't want to miss this opportunity to meet hundreds of people with TS face-to-face and make friends that will last a lifetime!

Some important updates and deadlines:

• The deadline to make reservations with the discounted hotel room block ends June 19^th at 5:00 pm PST.

• Registered attendees were sent an email last week with a link to book an appointment for a Healthy Heart Screening and consultations with Dr. Dean Mooney, a non-verbal learning specialist.

• We received a record number of conference attendees volunteering to help with the conference; thank you! If you would like to volunteer for the Decorating Committee (decorate on Thursday, take down on Saturday night) we will be sending out an email to attendees shortly.

• The theme for the conference and the Saturday Night Dance Party is Defy Gravity, so bring your Wicked gear if you'd like to dress up. (optional).

• We've added an optional activity for Thursday evening - a Friendship Bracelet Making Class! Pre-registration is required. Register using the link in the image below.

• There will be karaoke, so think about what song you might like to sing (space is very limited, and will be on a first come, first served basis).

• The Youth Program Leaders and the Youth Program Schedule are available to view and download on the conference website.

• Ground transportation is $3.00 to travel from the airport to the hotel (24 minutes) using the Portland TriMet tram, specifically the MAX “Redline”



• The Exclusive V.I.P. Butterfly Society Reception - each year, we honor our Butterfly Society Monthly Giving Donors and our Major Donors (a single gift of $1,000 or more within the last year) with a cocktail and hors d'oeuvres reception on Friday night. This is by invitation only and childcare will be provided in another room. Join the Butterfly Society HERE and you can be a part of the reception.

The updated Conference Schedule at a Glance is now posted on the TSSUS conference webpage HERE or download and print it HERE.

Defying gravity takes tremendous effort, so consider the conference your launch pad. Float through an environment of a supportive group of people who really understand you. Be yourself, accept others as they are, and forever be changed because of friendships.

There is much more information on the conference webpage HERE including important deadlines, reasons you should attend and what to expect. The conference has been described by those who attend as "life-changing". Everyone with TS should attend at least once!

Meet the TSSUS Conference Youth Program Leaders HERE

View the Youth Program Schedule of Activities HERE.

We've added an optional activity to the conference schedule. We'll be making our own Friendship Bracelets! Join us Thursday evening in the ballroom from 6:00 PM to 7:30 PM.

We'll provide instructions and supplies enough to make four bracelets. The fee is $15 per person. Please pre-register so we can prepare the supplies in advance. On-site registration may not be available.

We are looking for 3-5 volunteers to help with the activity. If you are interested and registered for the Conference, please email becky@turnersyndrome.org.

Have Your Read the Clinical Practice Guidelines for Turner Syndrome?

Every day, we are asked questions like "How often should I have my heart checked?" and "When should my daughter see an endocrinologist?"

Did you know that the Guidelines include all of that information and more? There are surveillance schedules for each specialty and recommended testing/frequency.

The Guidelines are free to download in both English and Spanish, and the English hardcopy is available to purchase in the TSSUS online Butterfly Store.

We are so happy to announce that we made our first TSSUS Adoption Assistance Grant this month! If you are trying to add to your family by way of adoption, please take a moment to click the link below to learn more about how TSSUS can help financially.

Are you passionate about making a difference in the Turner syndrome community? The Turner Syndrome Society is excited to announce that the Board Member Application is now open!

We're looking for dedicated individuals who are ready to bring their skills, experiences, and heart to our mission. Serving on the board is a unique opportunity to help guide our future and support those touched by Turner syndrome.

If you are interested, learn more about the responsibilities of nonprofit board members at   Board Roles and Responsibilities | National Council of Nonprofits 

Help TSSUS advance Turner syndrome research by becoming a part of the online Turner Syndrome Research Registry (TSRR). Please take a moment to enter you or your minor child's information today to help researchers discover new advancements in TS care.

The TS Research Registry enrollment, karyotype submission form, and health survey are now available in Spanish!

You can read more about the TSRR on the TSSUS website here:

Summer is coming and it's a great time for a

Chasing Butterflies Walk!

Chasing Butterflies Walks (CBW) are a national signature fundraising event for TSSUS, and they support our mission to advance knowledge, facilitate research, and provide support for everyone touched by Turner syndrome (TS). Our Walks bring those with TS and their families and friends together in a fun and supportive way to raise much-needed funds and awareness for TS. Approximately 50% of funds raised with walks are used to support local communities with things like conference scholarships!

We've made a big change this year! Registration to attend a walk is free! You will have an opportunity to register with a walk t-shirt for a fee to cover the cost of the t-shirt. T-shirts will be mailed directly to you prior to the walk. Registrations with a t-shirt will not be available 2 weeks prior to the walk to allow for mailing/delivery time.

For more details on how to get involved, or to host a walk in your community, click HERE.

2025 is turning out to be a BIG YEAR for TSSUS events - both virtual and in-person. We are offering 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.

50-Somethings Social Time

Sunday, May 25th, 3:30-4:30pm CT

Are you in your 50's and looking to connect with others with TS? This call is for you. At TSSUS, we help 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.

TSSUS Dallas/Fort Worth Pool Party

Friday, June 6th , 4pm-6pm CT

We hope you will join us! We will have two hours of pool fun followed by pizza and refreshments. Come out and enjoy the fun with us. We can't wait to see you there.

TSSUS Chasing Butterflies Walk, Vancouver, Washington

Saturday, June 21st, 10am-2pm ET

TSSUS Chasing Butterflies Walks are a great way to raise funds for TSSUS programs, come together as a community, raise awareness, and make some new friends. Our walks are about 1 mile, and leave plenty of opportunity to socialize. Registration is free, but we highly encourage you to create a team and ask your friends and family to support the cause with donations.

20-Somethings Social Time

Sunday, June 22nd , 2pm-3pm CT

Are you in your 20's and looking to connect with others with TS? This call is for you. At TSSUS, we help 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.

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 TSS Connect newsletter. If you have something you'd like us to consider for the newsletter, please send it to us!



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