We hope you are all staying snug and warm during this winter storm! We're feeling it here in Texas!
The start of a new year is always an exciting and busy time here at TSSUS. We welcome new board members, launch The Big Event - the TSSUS National Turner Syndrome Conference - finalize our annual budget, mail all of our fabulous donors an end-of-year donor summary letter for their taxes, and launch Turner Syndrome Awareness Month, just to name a few!
In this edition of The TS Connect, Cindy, Deborah and I want to call your attention to the much-awaited conference registration information, and the National TSSUS Virtual Chasing Butterflies Walk happening on Saturday, February 24th on a device or computer near you! You can also coordinate a Chasing Butterflies Walk in your area anytime of the year. Local walks fund things like conference scholarships for people in your state. Last year, we provided around 35 scholarships to the conference using walk funds!
We'd also like to spotlight a new growth hormone clinical study from our friends at Novo Nordisk and an ongoing clinical trial with Ascendis Pharma. Studies like these are so important for the TS community because they can lead to advancements in growth hormone therapy (GHT) for our young butterflies. Please take a moment to read about each of these in the appropriate sections below.
Toward the end of the month, we'll be sending out an email with all the goodies you might need for Turner Syndrome Awareness Month! Keep an eye out for it! In the meantime, why don't you take a moment to share your TS Story and a photo with us so that we can spotlight you on the TSSUS blog and our Facebook and other social media pages?
We'd also like to take a moment to thank each of you who supported our work here at the Turner Syndrome Society of the United States in 2023 with your thoughtful and generous donations. Whether you donate to the Annual Campaign, to a Chasing Butterflies Walk, in memory or in honor of someone in the community, or are a monthly donor in the TSSUS Butterfly Society - we truly appreciate you. Not only does your financial support allow us to continue and expand our work in the TS community, it also validates it. When you support our work through your donations, you're standing with us, and adding meaning to everything we do. We appreciate you. You can expect an end-of-year donation summary letter from us before January 31st to use for your taxes.
Stay warm, and we'd love to hear from you!
Cindy, Becky, and Deborah
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Becky Brown
National Director of Development & Communications
The Turner Syndrome Society of the United States
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The 34th Annual TSSUS National Turner Syndrome Conference |
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It seems like just last month that we all gathered in Houston, Texas for the 33rd conference, and today we're announcing the 34th in Orlando, Florida!
The 2024 TSSUS National Turner Syndrome Conference will be held in Orlando, Florida, July 19-20, 2024. Be sure to arrive Thursday, July 18th to take advantage of the full conference which be starting at 8:00 AM Friday. Instead of featuring a half day on Friday and Sunday, we will have a full day Friday! If you travel Friday, you'll miss a lot of the conference programming. This is new this year! Saturday will be a full day as usual, including a Glow Dance Party in the evening.
We plan on leaving Sunday open for those of you who would like to take advantage of the opportunity to visit Disney World and the other theme parks nearby. We hope that everyone makes their way to Disney World on their own on Sunday, July 20th so that we can enjoy the day there together! The hotel we have chosen offers an inexpensive trolley that travels up and down International Drive shuttle to get around to restaurants and shopping and they have agreed to offer a one-day pass to TSSUS guests at no charge! You can purchase a three day pass for just $8, and a day pass for $6. This is one of those trips you might want to add a couple of extra days to and make it a full vacation!
In the coming weeks, we will share volunteer opportunities for the TS community.
We suggest you visit these websites linked in the buttons below to see what Orlando has to offer.
Volunteers & Miscellaneous:
In the coming weeks, we'll send out an email with links to the Volunteer Application. We encourage those who want to volunteer to fill out the application completely. It helps if you have attended a TSSUS conference before and have first-hand experience with the event.
Conference Scholarship Application is OPEN!
If you would like to apply for a conference scholarship that covers the registration fee, AND you are a paid TSSUS member or a TSSUS Butterfly Society monthly donor member, you can do that by logging in to your TSSUS account. The scholarship application will be in the upper \right hand corner of your screen once you log in. If you are not a member, you will not see the scholarship application option.
Conference scholarships are funded in large part with funds raised at local TSSUS Chasing Butterflies Walks and the TSSUS National Virtual Chasing Butterflies Walk. If you are interested in coordinating a local Chasing Butterflies Walk in your area, please reach out to deborah@turnersyndrome.org.
Private Conference Only Facebook Group
Once you've registered, we will send you an invitation to our private Conference Facebook Group were you can "meet" each other, arrange for room shares, and plan some social time.
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TSSUS At-Large Board Positions Elections - Results |
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We would like to thank both Dawn Aye and Denise Fisher for applying for the at-large position on the board. After an incredibly close vote, you have elected Dawn Aye to serve on the TSSUS board for the 2024-2026 term. Dawn is a dedicated mom and volunteer, and a strong advocate in her small Montana community. We'd also like to recognize Denise for all of her hard work in the TS community - and don't worry! We will be calling you for special projects!
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Dawn Aye, Montana
I am a cattle rancher in Montana, a mom of 5 (ages 15-39) and grandma to 7 (ages 6-19). My daughter was diagnosed with Turner syndrome in utero in 2006 and she and I attended our first conference in 2007. Since then, my family and I have attended multiple conferences in order to educate myself and be an advocate for my daughter, as well as educate our local doctors.
Living in a small town makes Turner syndrome knowledgeable doctors hard to find. After all the support we have been given from TSSUS, I am wanting to give back to the TS community and become part of an organization that has supported not only us, but thousands of other women and children with Turner syndrome across the world. I understand the responsibilities of nonprofit board work, have been on multiple boards and held leadership positions of youth clubs. I look forward to serving this community that has become part of our lives.
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TSSUS 2024-2026 Board of Directors |
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Here is the 2024-2026 roster of TSSUS Board Members and their terms. Join us in welcoming Jeanna Lee as the incoming Board Chair and Sarah Bauer as the incoming Board Chair-Elect. We'd also like to welcome Elizabeth Dabrowski Bria Kelly, Danielle Smith, and Dawn Aye who will be joined the board in January 2024.
TSSUS 2024-2026 Board Roster and Terms
Jeanna Lee, Board Chair
Woman with Turner Syndrome
Term ends 2025
Sarah Bauer, Board Chair-Elect
Parent
Term ends 2026
Daniel Tompkins, Treasurer
Spouse
Term ends 2024
Dawn Aye, Secretary
Director-at-Large
Term Ends 2026
Elizabeth Dabrowski, MD
Professional
Term ends 2026
Bria Kelly
Woman with Turner Syndrome
Term ends 2026
Kristen McKinney
Parent
Term ends 2025
Danielle Smith
Parent
Term ends 2026
Jennifer Steele
Woman with Turner Syndrome
Term ends 2025
Kimberly Walker-Vanover
Woman with Turner Syndrome
Term ends 2025
Laura Wuertele
Woman with Turner Syndrome
Term ends 2025
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Research Study for Children with Turner Syndrome |
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Did you know there is a research study currently looking for children who have Turner syndrome and have not started medication to help them grow? Before a new medicine can be prescribed by doctors, it must be tested. This is to see if it is safe and if it works as we expect it to.
Summary:
This study is comparing a new investigational medicine called somapacitan with Norditropin® for the treatment of children born small and who stay small, or with Turner syndrome, Noonan syndrome, or idiopathic short stature. Norditropin® has received approval from the Food and Drug Administration and is a medicine doctors can already prescribe for the treatment of children who need help to grow in some countries.
- Your child will only participate in the part of the study related to children with Turner syndrome. This is called a sub-study.
- The company doing this study is called Novo Nordisk. Novo Nordisk is a company that develops new medicines.
The study will last for about 3 years.
- Your child will either get somapacitan once a week for 3 years or Norditropin® once a day for 1 year followed by somapacitan once a week for 2 years. Which treatment your child gets is decided by chance.
Participation:
Interested parents of girls that have Turner syndrome and are 2.5 to 10 could contact one of the many clinical study sites in the US.
For more detailed information ask your child’s doctor and/or go to Clinicaltrials.gov.
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Each year, TSSUS prepares an Annual Update Report that summarizes our work for the last year and our focus moving forward into the new year.
Please take a moment to watch this short video where Cindy Scurlock, TSSUS President, Brittany Laski outgoing Board Chair, and Jeanna Lee, incoming Board Chair share this information with you.
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Share Your TS Story for TS Awareness Month and Beyond! |
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Krystie Wells recently shared her TS story with TSSUS.
Read only if you want to be inspired!
Hello! My name is Krystle Wells, and I am a TS Butterfly. We found out when I was 5 years old. My mom always said that she suspected something was 'different' about me way earlier than that, but my grandparents were in strong denial. I was always a vivacious child. I never got into much trouble in school, except for notes on my report cards that said I was too talkative. I excelled in language and struggled in math. Now, I know that's par for the course for us butterflies!
I started growth hormone replacement when I was in about the 3rd or 4th grade if I remember correctly. I was and am extremely fortunate, as all my tests on kidneys, heart, etc. have been normal. I was, however, diagnosed with ADHD a month ago at the age of 43. That's been a whirlwind of emotions. I finally feel seen, and yet I feel even more flawed. I have had anxiety since middle school. I went through my fair share of bullying - to the point that it was listed as a past trauma when I started therapy.
Middle school was when my life started its current trajectory - albeit a very twisted and windy road. My favorite teacher, Mrs. Drake, put a flute in my hand in the 7th grade. Ever since then, music has been my passion. I also joined the choir in high school. Mr. Smith, my choir director, and Mr. Lloyd, my band director, were a pivotal part of my development. They nurtured my love of music and pushed me to accept nothing but my highest capabilities.
When I graduated, I went straight to Northern Arizona University on a music scholarship. I studied music education for a year, then changed majors to elementary education with a music minor/emphasis. That decision was something I would later regret, but it was the right thing for me at the time since I struggled living on my own, as many butterflies will, without the proper parental guidance. My mom protected me from everything. I don't really fault her for that, as I know that when you find out your child could have never been born, you cling a little harder. So- I found that I had to build my own sense of independence and resilience.
I graduated from NAU in 2006. I taught first grade in a small Arizona town for two years but missed music far too much. I started teaching elementary general music and did so for ten years, until I married the love of my life. I originally met my husband in college, and we were friends through the school of music. We didn't connect again until after I divorced my first husband and moved to the city. The Phoenix metro area was a much better fit for me. Eric and I married in 2014, and anywhere he will be my forever home. He is also a music educator, and we went back to school for our master’s degrees at Arizona State University in Tempe. (GO DEVILS!) We graduated together in 2018, and moved to San Antonio, TX.
Mow, I teach middle school choir, and he teaches middle school band. We have five pets (two dogs, three cats) and love to travel and explore our mutual interests, including our shared Scots/Irish heritage, all things nerdy, (see Star Trek and Dungeons and Dragons), and of course - music. When the subject of a family came up before our engagement, Eric was very supportive through my acceptance of infertility.
We will very likely adopt one day soon, but in the meantime, we have our students to nurture! Not only that, but recently we began hosting foreign exchange students! We now have an Italian daughter and a German daughter who will both occupy space in our hearts forever! We speak with them weekly even now that they have returned to their home countries. Next year, we will welcome two more excited foreign exchange students into our home. This path has been so very fulfilling that now we can't imagine our lives any other way. We may have to work a little harder. We may have to be a little stronger - but baby, we can fly through a hurricane! #ButterfliesForever
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Turner Syndrome Research and Updates |
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The Turner Syndrome Research Registry (TSRR)
The TS Research Registry Helped the Surgery Recovery Study.
Congratulations to the 1,283 people with TS who joined the Society’s TS Research Registry!
Your support and participation IS making a difference.
Interesting note- there are 10 ladies that in their mid-70’s and early 80’s that participate and for some of you, just knowing that someone has TS, is 83 years old, and doing well is exciting news!
Please support the registry by joining and filling out the health survey online. If you joined during the conference, you should receive an email and link to the survey soon if you have not already received it.
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A U.S. Clinical Trial Opportunity for Children with Turner Syndrome for Once Weekly Growth Hormone Injections
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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Turner Syndrome Awareness Month |
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Be sure to grab your new 2024 Turner Syndrome Awareness Month shirt - they are selling out FAST and many sizes are sold out. If there is enough demand, we MAY place a second order but we won't have them before February 1st. If you weren't able to get the size you need, be sure to submit a "restock request" on the order page.
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Turner Syndrome Awareness Month Coming Soon! |
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Let TSSUS Shine the Spotlight on YOU!
Nothing is quite as impactful as you sharing your personal TS story. Not only does it raise awareness of TS, but your story might also help someone who is struggling with a new diagnosis or a particular life-challenge.
In 2023, we published more than 110 My TS Stories to our blog during February. Let's make this Awareness Month even bigger! Help us get a head start by submitting your story and photo early.
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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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We have a busy year planned! If you would like to host a local TSSUS get-together, please reach out to us. All of our events require pre-registration. You can register for all of these events on our website using the Event Calendar link below.
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Sunday, January 21, 2024
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! Be sure to register no later than 4PM on the Friday before the meeting so that the link can be emailed to you.
Sunday, January 28, 2024
11:00am-12:00pm CDT
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 for this virtual opportunity for people with TS in their 20's.
Sunday, January 28, 2024
12:30pm-1:30pm CDT
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 for this virtual opportunity for people with TS in their 30's.
Sunday, January 28, 2024
2:00pm-3:00pm CDT
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 for this virtual opportunity for people with TS in their 40's.
Sunday, January 28, 2024
3:30pm-4:30pm CDT
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 for this virtual opportunity for people with TS in their 50's.
Saturday, February 10, 2024
9am -12 pm CDT
Join the TS community in Moore, OK for a fun filled morning at the TSSUS Chasing Butterflies Walk! Create a walk team, register, and donate!
February 11 - June 16, 2024
Be Your Best Butterfly Coaching Groups for teens (ages 14-18) and tweens (ages 11-14) are kicking off for 2024 with a new focus on social and executive functioning skills. If you have a teen or tween interested in learning skills to be their best self at home, school, and with friends, please sign up! Registration is only $20.00. The coaching group includes 5 virtual monthly meetings and exercises to practice skills outside the group.
Saturday, February 17, 2024
9:00am-1:00 pm Central
Please join us for the 5th UTHealth Turner Syndrome Community Day sponsored by the Turner Syndrome Society of the United States and the TS Adult Comprehensive Care Center at UTHealth. This event will host speakers from UTHealth about TS healthcare. Afterward, there will be a reception where you can meet with our team and network with other people in the Turner syndrome community. The fee is $10 per person/family.
Saturday, February 17, 2024
10:00am-3:00 pm
We hope you will join us for some great social time and opportunities to learn about cardiac issues, diabetes and NLD.
Saturday, February 17, 2024
2:00pm-4:00 pm
Sheffield, MA
Join us for a fun meet and greet where you can find support and make new friends.
Saturday, February 24, 2024
10:00am-11:00am Central
The Chasing Butterflies Walk is the national signature fundraising event for TSSUS that raises much-needed funding and awareness for TS. This will be a virtual, nationwide walk event for Awareness Month. Get registered and start fundraising now so you'll have lots of time to make your goal.
We will have some fun prizes to give away! Stay tuned for more information on prizes and fundraising goal items.
Sunday, February 18, 2024
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! Be sure to register no later than 4PM on the Friday before the meeting so that the link can be emailed to you.
Saturday, February 24, 2024
12:00pm-4:00pm
Grandview, Michigan
We hope you will join us for lunch and social time and then off the shopping at the Rivertown Crossings Mall.
Sunday, February 25, 2024
2:00pm-4:00pm
Arlington, Virginia
This event will offer information on the transition of care presented by the Director and Pediatric and Adolescent Gynecologist Dr. Jacqueline Maher, who also sees patients at the Children's National TS Clinic. There will be time before and after the program for participants to meet one another and share experiences and resources. We ask that you bring a food or beverage item to share with others.
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TSSUS: A Community of Hope
You amaze me every day! In our Facebook group and across social media, I see you all supporting each other and lifting one another up!
Thank you to all of the people - parents and women with TS - who are online every day supporting the TS community with your shared stories, kind thoughts, photos, and encouraging words. It makes us proud to be a part of it all.
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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. 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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