There is so much going on at the Turner Syndrome Society of the United States these days! Be sure to view the web version of this email by clicking the link above your name. We don't want you to miss a thing!
We as a staff have had some significant life events going on just before and after the conference. Deborah's house had a repeat flooding incident just after her remodeling and repair from the Texas freeze was completed, and the process had to start all over.
My father had a stroke a week before the conference and that has been a life-changing event for my family. If you were at the conference, you may have seen my daughter, Madi, manning the Butterfly Store. She was 7 months pregnant. Just after the conference, she went in to emergency pre-term labor and after almost a week of trying to delay it, my first grandchild, Oliver was born at 31 weeks. I'm thrilled to say he came home from the NICU a week ago after having spent 56 days there. Both are doing very well.
A couple of weeks after the conference, Cindy's mother passed away. Cindy wanted to share this with you:
"I’m forever grateful to our staff, Deborah and Becky, our board chair, Brittani and other board members for allowing me to focus on what was important to me over the last few years. My Mom was diagnosed with ovarian cancer in 2020 and died a couple of weeks after this year’s TSSUS conference, in July at age 72. She was a HUGE TS advocate; she rarely missed an opportunity to tell someone about TS. She said things like, “I’m buying these pants for my granddaughter, she is petite because she has a condition called Turner syndrome but she’s so smart and is a teacher.” My family was blessed to have the time to gradually transition to being without her. I can’t convey how much the TS community means to me as a parent of a daughter with TS and as the President of TSSUS.
Thank you!"
Other news and happenings:
First off, the TSSUS National Turner Syndrome Conference was a huge success, and it was great seeing you all again. Please read the conference summary below in this newsletter for all the details, and take a look at all of the great photos this year.
Lots of you are anxiously awaiting the announcement of the 2024 conference. TSSUS President/CEO, Cindy Scurlock, wanted to share this update:
"Plans for the 2024 conference are pending, but we expect to accounce the location at the end of October. You may recall us mentioning that it’s a challenge to find a hotel that fits our needs, which include being near an airport, having more than 250 guest rooms each night, having large meeting rooms for multiple sessions, and our youth program - and all at and reasonable prices. We are often asked why we don’t have conferences in the northern states often and it’s simply because the summer is the peak season for states that are cold for much of the year. What that means is busy hotels may require us to spend $150,000 at their hotel for meeting space or food and beverages while a less busy hotel may require much less. Ultimately, we try to keep the conference registration and hotel guest room costs as reasonable as possible. We will update you on the 2024 plans as soon as we decide."
Research Opportunities and Updates:
If you attended the conference, you may have noticed the Ascendis Pharma booth. Ascendis is recruting children with TS to participate in clinical trials for the once weekly growth hormone injection. Read more about the opportunity below.
TSSUS board members Kristen McKenney and Sarah Bauer are providing valuable insights in the California Department of Public Health Newborn Screening Program workgroup. In 2024, newborn screenings in California will also detect infants with an abnormal number of chromosomes, such as in Turner syndrome. The workgroup will suggest best practices for practitioners for communicating the purpose of the screening. One of the topics to be discussed is whether the test will be standard or offered as an additional test specific to identify Sex Chromosome Aneuploidies (SCA).
Be sure to check out he TSSUS Events listed in this newsletter and on our Events Calendar on the webpage, and thank you for being a part of TSSUS!
All the best,
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Becky Brown
National Director of Development & Communications
The Turner Syndrome Society of the United States
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TSSUS National Conference Summary |
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The 2023 annual TSSUS conference attendees stepped into the wild west in Houston, Texas July 14 - 16, 2023. The anticipation of seeing one another after 3 long years peaked on Friday! More than 645 people shared the excitement of taking photos, learning as a group, learning from experts one-on-one, and learning from one another.
Over half of the attendees had TS, the other half were mostly parents, significant others, and family members. About 30 medical speakers and volunteers from the UT Health Center in Houston supported the conference by sharing their knowledge and offering health screenings.
Friday allowed people to connect with each other through small groups based on ages then sessions revolved around mental health and learning and behavior. Saturday was a deep dive into the medical aspects of TS based upon the TS Clinical Practice Guidelines.
To offset the vast amount of information, we had an inspiring speaker about not giving up, dressing stylishly for a petite figure, karaoke, and a DJ dance party with a wild variety of music.
Sunday allowed people to share experiences and learn from one another about daily needs related to TS. Aside from official conference happenings, people enjoyed decorating their own cowboy hat, going to NASA, there was an impromptu bridal shower, engagement celebration, a tea outing for those with diverse ethnic backgrounds, and gatherings by the pool, bar and in people’s rooms to catch up or meet one another.
Understandably, not everyone who wants to attend the annual conference is able to, but the in-person experience is only a piece of the experience. Look forward to us announcing when the conference session videos will be available for viewing. Take advantage of the re-energized online social and educational events. Look forward to local events taking place near you and attend them. Start saving money in hopes that you can attend the next conference because almost 100% of those who filled out the conference survey said they definitely recommend the experience to friends!
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Now Accepting Applications
for the TSSUS Board of Directors
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TSSUS is now accepting applications for dedicated volunteers to serve on the 2024-2026 TSSUS Board of Directors. We know those interested in volunteer leadership have many choices. There are remarkable organizations engaged in the important work of making our world a better place. We are humbled knowing that you might interested in working with TSSUS.
At TSSUS, board service requires a few hours a month, as well as one in-person board meeting adjacent to the TSSUS National Conference in the host city for that year. Two of the most important aspects of TSSUS are community and awareness. If you feel any part of you being tugged to volunteer with TSSUS, even by applying for the board, we highly encourage you to fill out an application to be a part of the Board of Directors. We are looking for individuals with Turner syndrome and parents, spouses, and family members of those with TS. There is particularly a need for a secretary on the board.
Please take a moment to complete the application by following the link below. This will allow us to understand what skills you might bring to our board. It also gives you a sense of what matters to us in any board candidate. Our goal is to determine if we are a good fit for each other – your level of commitment and ability to deliver on our expectations so you may help us meet the expectations of the TS community.
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Turner Syndrome Research and Opportunities |
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The Healthy Heart Project Summary
The in-person Healthy Heart Screening and Study at the TSSUS conference was successful and continues to provide insights to both researchers and participants alike. Volunteers conducted a record-breaking 140 free echocardiograms this year. We will share more detailed information about the end results as they become available from the research.
TSSUS would like to thank doctors Emilio Quesada, Michael Silberbach, and Siddharth Prakash, for their dedication and endless hard work on this project. We would also like to thank the volunteer sonographers, and front desk volunteers from TSSUS, as well as the volunteer medical students from UTHealth in Houston.
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The Turner Syndrome Research Registry (TSRR)
The TS Research Registry: 87 people joined the registry in July, and they will be receiving the registry questionnaire soon! There are now more than 1,100 people in the registry helping researchers learn new information.
During the TSSUS National Conference, summaries of recent TS research studies were presented and recorded. We expect to have the videos available to you all soon. We thank all the registry participants for their ongoing support as well as those who completed the estrogen survey. We were not sure how many women struggled with estrogen related needs, but your responses were overwhelmingly clear- estrogen treatment needs improvements. The estrogen study workgroup will remain active and keep you updated.
Please join the TS Research Registry if you haven’t yet!
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A U.S. Clinical Trial Opportunity for Children with Turner Syndrome
New InsiGHTS is a U.S. clinical trial that will investigate lonapegsomatropin in children with Turner syndrome. The trial will compare the growth rate in children with Turner syndrome receiving once-weekly lonapegsomatropin to children receiving daily treatment of somatropin.
Lonapegsomatropin is not approved by any health authority for treatment of short stature due to Turner syndrome as safety and efficacy has not been established for this patient population.
Who may participate:
Children 1 to 10 years of age with Turner syndrome who have never been treated with growth hormone are invited to screen for eligibility at participating clinical sites.
How to participate:
- There are multiple medical centers across the U.S. participating in the trial.
- Coordinated travel arrangements and expense reimbursements for certain trial-related costs will be provided to eligible participants.
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Contact your pediatric endocrinologist or the study sponsor, Ascendis Pharma, at NewInsightsTrial@Ascendispharma.com to find a participating center.
About the Sponsor
Founded in 2007, Ascendis Pharma is applying its innovative TransCon technology platform to build a leading, fully integrated biopharma company focused on making a meaningful difference in patients’ lives. We are headquartered in Copenhagen, Denmark, and have additional offices in Germany (Heidelberg, Munich, and Berlin) and the United States (Palo Alto and Redwood City, California, and Princeton, New Jersey). Learn more about Ascendis Pharma at www.ascendispharma.com.
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Stickers in the TSSUS Store |
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Stickers are all the rage right now, so we've added three new selections to our store. The conference sticker is 3 x 4 inches, and the others are a substantial 4 x 4 inches!
These are great to put on your laptop, your iPad, your favorite journal, and 100 other places! Be sure to check out all of the TSSUS merch, including t-shirts, stickers, books, resources, and more!
When yours arrive, send us a photo of where you put yours!
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This Month's featured TS Story |
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She Has Defied All Odds
- by Talia Bartelini
We found out Diana had Turner syndrome at around 20 weeks gestation. Up until this point we were told, and believed, that she was a boy with no issues. The previous scans and testing did not pick anything up. It was when I went for an anatomy scan at 18 weeks that they told me the baby was a girl and that everything was okay.
Being an RN, I knew when a blood test has an extremely high accuracy for results turns out to be wrong, something might be going on. After another non-invasive prenatal test (NIPT), we got the results that the baby had Monosomy X. I ended up having an amnio, which confirmed that the baby had TS, and was in fact a girl, not a boy.
Right before the amnio, they did a scan. That’s when we found out about possible heart defects, which weren’t seen on her anatomy scan a week prior. Things were thrown around, like ASD and small side left heart, and our heads were spinning. How could our perfectly healthy boy become this baby girl that we might never meet?
This was the beginning of what felt like the longest 18 weeks of our lives. There was constant disappointing news, heartbreaking conversations, and negative comments. We went to multiple doctors who told us that our daughter was going to have many difficulties in life, that it looks like she has HLHS, and that this diagnosis is pretty devastating. Every single doctor/social worker/genetic counselor we saw offered us similar options and most led to termination of the pregnancy. Every doctor said the baby’s cardiac defects would make her quality of life so poor that it wouldn’t be advised bringing her into this world.
We were heartbroken, and couldn’t accept this. If this baby made it to 20-something weeks, we were going to fight for her to be here. We continued to hear the same story from every doctor - except for one. We requested to see a pediatric cardiologist who specialized in fetal echos. This cardiologist was the only doctor that gave us some hope. He didn’t sugarcoat the facts, and told us how difficult it was going to be. But he assured us we could do this and that this baby was fighting. He also told us that a more common cardiac defect in TS was a coarctation of the aorta, and that it appeared Diana had this.
The heart at that time is so tiny, and it’s really hard to confirm the defect until the baby is physically here. He told us the left side was probably small due to the restricted blood flow from the coarctation. No one wants their child to be sick or to live their life with medical problems, but we left his office with confidence that we were going to get her through this.
For the first time, we left a doctor's office with a little more hope. Fast-forward to the fall, after many doctor appointments, constant stress, heaviness and pain, doubt and disconnection, but also love, support and a fight for our baby. Diana arrived on October 4, 2021. She was born at NYU Children’s Hospital in New York City. She came out, pink, breathing and beautiful. At 10 days old, she had open heart surgery to correct the coarctation. There were many days spent unsure she would be able to survive this. Diana has multiple heart anomalies—she had unexpected congenital chylthroax that put her life-saving surgery on hold and won her first chest tube—but she recovered from the surgery beautifully.
She has echocardiograms every six months at this point, and her cardiologist is happy with everything to date. Despite our ups and downs the past almost 2 years, Diana is a happy, smart and beautiful little girl. She’s been in early intervention since she was three months old to work on PT/OT, speech, and feeding. She recently had tubes placed after multiple ear infections. When she gets sick, she gets a little sicker than everyone else and it lasts a little longer. She has some stomach issues, but what baby doesn’t?
Despite all that has happened, and despite anything to come, she has changed more people than she’ll ever know. I didn’t realize how hard life can get until I watched my daughter go through so many things before she was even a year old. These things change you as a person. She has given the hopeless hope, she’s made me believe in things I didn’t think I could believe in, she’s changed my opinion on many things.
Diana has changed my outlook on life. She has given me a voice to stand up for those who might not be able to, and her being here in this world has given me a new appreciation for the power of faith and medicine. The road ahead comes with some unknowns, but Diana can always be sure she has a team, an army, behind her, supporting her through any ups and downs she might have. She is our miracle baby, our butterfly girl, and the world is brighter with her here. -Diana’s mom
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Join Diana and her mom at the TSSUS Chasing Butterflies Walk in Purchase, New York! |
If you are in the area of Purchase, New York, or would like to make a donation in support of TSSUS, Diana's mom Talia is hosting a TSSUS Chasing Butterlfies Walk on Saturday, October 7th!
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Do You Know of a GREAT TS Physician or Clinic? |
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Do you have a great doctor or clinic you don't see listed here, please recommend them by emailing us. This online directory relies on referrals from the TS community, and we'd love to hear from you! Please email
info@turnersyndrome.org with any referrals.
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Connect with others with TS through
TSSUS Local and Online Events
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Our calendar is overflowing with 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.
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Saturday, October 7, 2023
10:00am-2:00pm Eastern
Manhattanville College
2900 Purchase Street, Purchase NY 10577
Come enjoy a morning of fun while fundraising for the Turner Syndrome Society! Chasing Butterfly walks are a great way to show your support, spread TS Awareness, and meet new friends. Pre-registration is required to participate. Earn a free t-shirt by raising or donating $100, and earn lots more great prizes for each fundraising level you reach.
Saturday, October 7, 2023
10:00am-3:00pm Eastern
Anderson Snow Park
1360 Anderson Snow Road
Springhill, FL 34609
Come enjoy a morning of fun while fundraising for the Turner Syndrome Society! Chasing Butterfly walks are a great way to show your support, spread TS Awareness, and meet new friends. Pre-registration is required to participate. Earn a free t-shirt by raising or donating $100, and earn lots more great prizes for each fundraising level you reach.
Saturday, October 7, 2023
6:00pm-7:00pm Mountain Time
The Old Spaghetti Factory
5718 South 1900 West
Taylorsville, UT 84129
We hope you will join Utah locals to enjoy a nice dinner, social time, and a chance to meet those in the local community.
Sunday, October 8, 2023
2:00pm - 3:00pOnline
We hope you will join Iowa locals for this online Zoom chat.
Saturday, October 14, 2023
10:00am-3:00pm
Inlet Island Clubhouse
5401 South Island Drive East
Bonney Lake, Washington 98391
2:00pm-3:00pm
Come join us for a day of fun and community in Washington! See old friends and make new ones.
Saturday, October 14, 2023
12:00pm-4:00pm
McCall's Pumpkin Patch
2 McCall Lane
Moriarty, NM 87035
We would love for you to join us for this fun event. We will enjoy picking out pumpkins just in time for the fall holiday. Come out and have fun with us and enjoy meeting others in the local community. You may purchase tickets at the event, and pre-registration here is required.
Sunday, October 15, 2023
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, October 15, 2023
2:00pm-4:00pm
Arlington Mills Community Center
909 South Dinwiddie Street
Arlington, VA 22204
Join The Nation’s Capital TSSUS Support Group for a paint afternoon while you get acquainted with fellow members. Everyone is invited to paint along as Gwenn Zaberer teaches us how to create a fall-theme painting.
This is a free, in-person event. You must register for this event if you wish to attend by October 2, 2023. Paintbrushes, canvases, and paint will be provided. Light refreshments will be served. Please wear clothes you would not mind getting paint on.
Saturday, October 28, 2023
12:00pm-4:00pm
La Jolla Shores Park
8300 Camino Del Ord
La Jolla, CA 92037
We hope you will join us! This event is a beach potluck event so please bring a dish to share with others.
Sunday, October 29, 2023
11:00am-12:00pm 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, October 29, 2023
12:30pm-1:30pm 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, October 29, 2023
2:00pm-3:00pm 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, October 29, 2023
3:30pm-4:30pm 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, November 4, 2023
10:00am-2:00pm Eastern
Glasgow Regional Park
2275 Pulaski Highway, Newark, DE 19702
Come enjoy a morning of fun while fundraising for the Turner Syndrome Society! Chasing Butterfly walks are a great way to show your support, spread TS Awareness, and meet new friends. Pre-registration is required to participate. Earn a free t-shirt by raising or donating $100, and earn lots more great prizes for each fundraising level you reach.
Sunday, November 5, 2023
2:00pm-4:00pm
Panera Bread
2260 E SR-50
Clermont, FL 34711
We hope you will join us for this meet and greet!
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Stay connected and in the loop on the latest news with TSSUS. Make some new friends. Join one of our official TSSUS Facebook groups! |
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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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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 so wholeheartedly in TSSUS programs. 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 in the e-newsletter, 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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