It’s difficult to make Turner syndrome (TS) information simple, but that’s exactly what we do here at the Turner Syndrome Society of the United States (TSSUS). Offering clear and direct TS care information and advice takes a lot of effort and we will continue to work hard to do so. During the recent in-person board meeting, we discussed the results of the survey we sent to you all about your TS needs. It was identified that the patient version of the Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome (the Guidelines) requires a college reading level to fully understand it. It’s not helpful if people read it but can’t apply it easily, so we’re going to make it even easier to understand.
The TSSUS virtual TS Days was a success; people appreciated a shortened presentation time that allowed for more questions and answers. The presenters graciously answered all submitted questions and sent their answers even after the event, which we emailed to all of those who attended. Just a reminder that we have the best professionals offering their support to the TSSUS community! TS experts volunteer their time on weekends, evenings, and during their workdays to discuss what they know, organize research, and even answer emergency questions.
This fall, you’ll receive (if we have your USPS mailing address) the TSSUS 2022 Annual Fundraising Campaign information, Becky will share more information about the campaign within this newsletter. Staff will begin planning for the 2023 annual TSSUS National Turner Syndrome Conference! We’ll finalize the 2023-2025 strategic plan and prepare the 2023 budget. The online membership report will outline the accomplishments of 2022 and offer a sneak peak of our 2023 plans. Of course, connecting you to others is highly important as the holidays approach. If you haven’t attended one of the age groups Zoom meetings, you should try it, it’s simply a chance to listen or share with friends.
Deborah and I have had the pleasure of working for TSSUS for 15 years! Deborah’s TSSUS anniversary is in October and she’s such an integral part of TSSUS, we can’t imagine managing without her. Deborah and I met prior to her work at TSSUS as her two daughters were friends with my two daughters in Kindergarten. Now they are smart and beautiful young ladies and we are … old but still smart and beautiful!
Thanks for always sharing your stories, ideas, and photos, this is YOUR society!
Cindy Scurlock, President/CEO
Turner Syndrome Society of the United States
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A New Program for Tweens and Teens with TS
introducing Be Your Best Butterfly Group Infomational Session
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TSSUS and Mira Blumen are collaborating to help middle and high school students (grades 6th – 12th) with Turner syndrome (TS) with TS-related challenges. The TS brain is unique in how it processes information, and it is helpful to understand how it works differently than your family and friends. Someone with TS may struggle with schoolwork or making and/or keeping friends and get frustrated because they don’t quite understand why.
The Be Your Best Butterfly Group program teaches mindfulness skills that can help manage emotions and improve relationships. The program also aims to improve one’s self-esteem. These are common challenges for tweens and teens with TS. Mindfulness is the ability to recognize when your mind wanders and to bring it back to the present moment. It is a skill that must be learned and practiced, just like riding a bike.
There will be a free information session for parents and children on Saturday, November 5, 2022, at 12:00 PM PST, 2:00 PM CST, and 3:00 PM EST. During this session you will have the opportunity to ask questions about what you might expect by participating and find out more about the program itself.
TSSUS Be Your Best Butterfly groups will meet online (weekly) for 6 weeks. If you love the group and feel like it’s helping you, you can register for an additional 6 weeks, where the group decides what skills they want to learn.
Learning in a group setting will be fun, and it will help learn and build social skills. We will share stories about what we have tried, what worked, and why. There will probably be stories about how our parents can really get to us, even though they are just trying to help!
You might be thinking you don’t really want to join a group because you don’t want others to know you may struggle with certain things. That’s normal, but it’s also a great reason to join the group! You will learn how to observe what you’re feeling without letting it take control of your thoughts or actions. For example, “my heart is pounding, and I feel my chest tightening, am I scared or excited?” Once you notice if you are reacting to fear or excitement, you can ask yourself, “what is the worst that can happen; what is the best that can happen?”
This course can help you figure out what you’re good at and how to use your strengths to be your best at home, school, and with your friends.
The instructor, Mira Blumen, is a young woman with TS who holds a Bachelor of Social Work degree from Simmons University. Mira is also a certified yoga and mindfulness instructor.
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2022 TSSUS Annual Fundraising Campaign |
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“You gave me hope.” At TSSUS, we hear this time and time again.
From expecting parents with an often-frightening new diagnosis, to those
who are dealing with issues related to TS over the course of their adult lifetime, that TSSUS offers HOPE is a recurring theme.
The TSSUS 2022 Annual Fundraising Campaign theme is "We are hope." We chose this to honor all of the people in the Turner syndrome community who have reached out to us for help, understanding, clarity, and HOPE during the course of our 35 year history.
If you haven't by now, you will soon receive a package in the USPS mail (if we have your mailing address) about how you can support this campaign, along with a donation return envelope. We encourage you to help us spread hope by making a donation in the coming days via mail, or today with this donation link.
Remember, TSSUS is here anytime you need us and are just a phone call or message away!.
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TSSUS Virtual Chasing Butterflies Walk |
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Coming to a backyard, park, or driveway near you!
We're doing it again! The TSSUS Virtual Chasing Butterflies Walk is happening on Sunday, October 29, 2022 at 12:00 PM CST.
The Virtual TSSUS Chasing Butterflies Walk is back! Last year, all of you raised $33,000 through this fun, virtual walk experience, and we hope to top that with your support in 2022!
Once again, we've got some great prizes based on your individual fundraising efforts!
Raise $100 - free official 2022 walk t-shirt
Raise $250 - free official 2022 zippered hoodie
Raise $750 - free high-powered power bank phone charger
Raise $1,000 -free official high-quality embroidered gym / weekend bag
Each individual who raises $1,000 or more will receive ALL THE PRIZES!
The prizes accumulate - meaning if your raise $1,000 you'll receive all 4! These are premium, high-quality custom walk branded premiums you don't want to miss out on!
Get a head start and register as a walker, donate, and create your team page and include your personal story and photo, and get to steppin'!
We'll release more information and a day-of-event agenda details in the coming weeks, but you can get started today!
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Every individual who creates a fundraising page and raises $100 plus will receive a free official TSSUS 2022 Walk shirt.
You can also purchase a shirt in the TSSUS store.
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Every individual who creates a fundraising page and raises $250 plus will receive a free official TSSUS 2022 walk shirt AND this top-quality walk-branded hoodie.
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Every individual who creates a fundraising page and raises $500 - $999 will receive a free official TSSUS 2022 walk shirt, the walk-branded hoodie, and this useful and beautiful high-end power bank phone charger.
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Every individual who creates a fundraising page and raises $250 plus will receive a free official TSSUS 2022 walk shirt, the walk-branded hoodie, the power bank phone charger, and this exclusive embroidered walk-branded weekender / gym bag. |
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Harper Prince Raises $4,000 for TSSUS! |
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Join me in congratulating Harper Price on her mega-successful lemonade stand fundraiser for the Turner Syndrome Society of the United States. She raised $4,000! Last weekend, Harper and family set up this stand to spread awareness of Turner syndrome, and to raise money for the work of TSSUS. Harper’s mom, Kimberly, says that Harper did a great job of leading the charge with this event.
Thank you for all of your hard work, Harper!
If you'd like to know more about Harper and her family's story about her journey into the world, you can read about it HERE.
They don't call her "Hurricane Harper" for nothing!
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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 Hotel 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.
Registration for the Conference will open in early January, 2023, and more information will be shared in the coming months.
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TSSUS Turner Syndrome Research Registry (TSRR)
New Survey about TS and Infertility
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The Turner Syndrome Research Registry Report
A new survey about Turner syndrome and infertility will be distributed through the TSSUS Turner Syndrome Research Registry soon.
Please consider supporting the NIH (National Institutes of Health) study by joining the registry.
If you are a registry participant, please check your junk or spam email folder for emails from” UTHealth Turner Syndrome Society of the United States, tsregistry@uth.tmc.edu”. The subject line will include your record ID.
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The following study reports, “Bronchiectasis, a disease that presents clinically with repeated respiratory infections requiring antibiotics, disabling productive cough, shortness of breath, and hemoptysis (bleeding airway), and is rarely been reported to be associated with Turner syndrome in the medical literature.
How will we learn if it is related to TS? Because of people like you sharing your health information with the TS Research Registry and sharing your experiences with other people in the TS community through group Facebook groups. The TS community identified that ADHD is related to TS and that lymphedema therapy may help those with TS as well.
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I had Aortic Aneurysm Dissection at 23 |
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My name is Allison Andrews, and I am 23 years old. The day after my birthday this year, I had an aortic aneurysm dissection. I didn't feel bad - I was just a little tired that day.
I hiccupped, said “ouch”, and grabbed my chest. I then passed out. My older sister called 911 while my mom started helping me. I was only out for a minute.
They were asking me if I hurt anywhere. Only my ears hurt at that time. When the paramedics got there, they told my mom and sister it was nothing because my heart rate and blood pressure were normal. My mom told them I was at risk for a dissection due to Turner syndrome, and they finally took me to the hospital.
We had an amazing emergency doctor that was aware of TS and the risk of dissection, so she started all the tests fast! I had a six-hour surgery and was in ICU for 6 days. I am doing a lot better, but recently found out the stress of the surgery caused my bicuspid aortic valve to start leaking worse. I now need a replacement.
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Publishers note: I (Becky) read about Allison's ordeal when she posted it last week on Facebook. I was struck at how young she was, and reached out to her with a DM and asked her to share her story so that it might serve as a reminder to see your cardiologist regularly, and to be your own advocate. Had she and her family not been aware of the risk for aortic dissection related to TS and communicated that to the paramedics, Allison might not have received the care she needed so quickly.
Thank you for trusting TSSUS with your story, Allison!
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To all TSSUS members: Last week, you should have received a Board Ballot email to vote on the Person-at-Large board position. Please check your spam folders; respond to this email if you did not receive it and we can check your membership status. |
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TSSUS Offers a Huge Array of Virtual and
In-Person 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.
Be sure to check the Events Calendar on our website regularly. We add new events every week!
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Sunday, October 29, 2022
12:00pm - 1:00pm CST
The TSSUS Chasing Butterflies Walk program is the national, signature fundraising event for the Turner Syndrome Society of the United States. Please register, create a team, donate, and support this important and fun event!
Sunday, October 30, 2022
2:00pm-3:00pm 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 to have the chance to meet others in the area.
Saturday, November 5, 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, November 5, 2022
2:00pm - 3:00pm CST
Online
Are you in middle or high school? Interested in having fun and connecting while learning skills to be your best self at home, school, and with friends? Be Your Best Butterfly Groups for tweens and teens are starting on January 6, 2023.
This is an information session for tweens, teens, and parents! Weekly virtual sessions aim to increase self-esteem and teach mindfulness skills that help manage emotions and improve relationships. If you love the group and feel it’s helping you, you can sign up for 6 more weeks, where the group decides what school and work skills they want to learn. Groups are led by Mira Blumen, a TS young adult with a Bachelor of Social Work. She is also a certified yoga and mindfulness instructor. Register now for the free virtual information session.
Saturday, November 5, 2022
2:00pm-3:00pm CST
We hope you will join us to meet others in the Georgia area. This zoom opportunity is open to anyone in the local community to have the chance to meet others in the area.
Saturday, November 12, 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!
Saturday, November 12, 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!
Saturday, November 12, 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!
Saturday, November 12, 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, November 19, 2022
2:00pm - 3:00pm MST
We hope you will join us to meet others in the Utah area. This zoom opportunity is open to anyone in the local community to have the chance to meet and connect with others in the area.
Sunday, November 20, 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, November 27, 2022
2:00pm-3:00pm 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 to have the chance to meet others in the area.
Saturday, December 10, 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!
Saturday, December 10, 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!
Saturday, December 10, 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!
Saturday, December 10, 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!
Sunday, December 11, 2022
2:00pm-3:00pm PST
Virtual opportunity for those that want to connect with each other and walk away with lifelong friendships! Anyone from the California area is invited to attend. We hope you will join us to meet others in the New York area.
Sunday, December 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!
Thursday, December 15, 2022
12:00pm-1:00pm CST
This TSSUS Support Group is at the Oklahoma Children's Hospital in OKC. This luncheon coincides with a scheduled Turner Syndrome Clinic Day during the lunch break. You'll have the opportunity to be introduced to the clinic staff, and get to know better the people who work in the clinic, as well as meet other families in the community.
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Your Holiday Shopping Can Support TSSUS on AmazonSmile |
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When you shop on Amazon Smile, Amazon donates .05% of your purchase to TSSUS
Thank you to everyone who selected the Turner Syndrome Society of the United States as their charity of choice through the AmazonSmile program. When you shop through the AmazonSmile link, the company makes a donation to TSSUS, and it doesn't cost you anything or increase your purchase price. This is a corporate donation from Amazon based on purchases made by TSSUS supporters.
Make your holiday shopping more impactful! With each AmazonSmile purchase, you can support the great work of the Turner Syndrome Society! If you have not yet linked your Amazon purchases to TSSUS, you can do that by clicking the link below.
Thank you for supporting the mission of TSSUS through various channels. This one is easy to set up and allows Amazon to donate directly to TSSUS.
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The TSSUS Butterfly Society |
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TSSUS Merch Makes Great Holiday Gifts! |
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We have created a pretty fabulous collection of TSSUS-branded merchandise in our online store. We add new items every couple of months, and strive to have something for everyone.
All purchases go directly to support TSSUS and our work in the TS community. take a moment to peruse our store and find something to show your support and raise TS awareness!
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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 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 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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