Turner Syndrome Awareness Month in February was a whirlwind!! Together, we raised a great deal of awareness about Turner syndrome (TS) and those that have the condition.
Each year, we ask you all to participate in whatever ways you're comfortable, and this year, you really came through in a BIG way. Thank you all for being so open and sharing your TS Stories and photos with us; I know that it isn't always easy.
This month, we've published almost 90 My TS Stories written by people with Turner syndrome and those close to them. I sincerely hope you've had a chance to read these heartfelt and inspiring stories written by members of the TSSUS community. I have to tell you that, as I was editing and reading your stories, I was inspired, moved, and I felt joy and sometimes sadness.
Most of all I was proud to be the steward of your stories, and to use them as a tool to help others gain a better understanding of Turner syndrome and the amazing community of people who share this condition and their families and friends.
As we embrace March (and hopefully Spring soon!), TS awareness doesn't have to stop. You can continue to share your stories and photos with us, and we will continue to post them on the TSSUS blog and across our social media platforms. Look for a new blog post every couple of weeks. You can also chose one or two stories a week to share on your social media from those that have been published.
If you submitted a story and it hasn't been published yet, it may be because the submission was incomplete - missing either an address, a photo, or a phone number. I will continue to work my way through those stories and reach out to you if information is missing.
We have some great things happening in the coming months, most notably, the TSSUS National Turner Syndrome VIRTUAL Conference. We're working hard on this as we speak and will share details as we finalize things.
We are excited to announce that we are resuming in-person TSSUS events across the country, including TSSUS Support Group meetings and official TSSUS Chasing Butterflies Walks. If you have an interest in joining or volunteering for a TSSUS group or hosting a Chasing Butterflies Walk in your area, please reach out to our office at 800-365-9944, or email deborah@turnersyndrome.org.
Thanks so much!
Becky Brown
National Director of Development & Communications
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We are excited to announce that we are taking the 2022 TSSUS National Turner Syndrome Conference VIRTUAL! We're planning an amazing interactive event that will be both educational, informative, and fun for all ages.
While we realize the foundation of the TSSUS conference experience is getting together, in-person, and meeting old friends or making new ones, we feel this is the next best thing.
We'll share more details with you here as we finalize them.
Some frequently asked questions (FAQs)
Why isn't there an in-person conference this year (2022)?
TSSUS has to plan each conference almost a year in advance. We could not accurately predict the what the status of the worldwide pandemic would be in the Summer of 2022 last year.
Will there be an in-person conference in 2023?
Yes! We are planning for the 2023 TSSUS National Turner Syndrome Conference in Houston, TX in 2023.
Will there be membership discounts and scholarships for the 2022 Virtual Conference?
Yes and yes.
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Butterfly Wings to Angel Wings
New Memorial Page Added to turnersyndrome.org
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We recently added a Memorial page to the website to honor those in the TS community who have passed away.
The page will be permanently maintained and is dedicated to the memory of those who had TS or dedicated part of their life to support the TS community. TSSUS is inspired by every person with TS that passes away, regardless of if they were active in the TS community.
The memorial page is a labor of love and will improve over time as additional information is received. Please contact us if you know of someone that needs to be added, if you have specific information about someone, or if you have a quality photo of the person (photo of the person alone).
For the privacy of families, we encourage you to ask a family member to send us information. Currently, we are including people that have either an obituary or a picture/date of birth and death. If an obituary isn’t available and you would like us to include a comment about someone, please send the comment to us at info@turnersyndrome.org. We anticipate updating the page every few months.
Cindy Scurlock, President/CEO
The Turner Syndrome Society of the United States
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BIG Sale in the TSSUS Store!
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We don't do this very often, but right now through the end of March, we are offering a 20% OFF your entire TSSUS store purchase in our online store! This includes everything we offer! We have several styles of t-shirts in short sleeve, long sleeve, crew and V-neck, and some child sizes! We have a great new collection of butterfly jewelry at super affordable prices. We have resources like books and educational games, as well as stickers and decals for everything from your favorite tumbler to your car window or p laptop!
Don't miss out on this rare store sale. You need only enter the promo /coupon code 20OFF at checkout.
Sales ends March 31, 2022 at midnight CDT.
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TSSUS Local, In-Person Events and Walks Are Back!
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It's been a long two years with no in-person TSSUS Chasing Butterflies Walks or official TSSUS Local Support Group meetings or activities. I'm excited to announce that we are back in business!
The Chasing Butterflies Walk program is the signature fundraising and awareness event for the Turner Syndrome Society of the United States. We, along with local walk coordinators and volunteers, hold fundraising walks in cities and communities across the country to help raise awareness of TS.
Our walks allow the TS community to join together with the local business community for a fun day!
If you'd like to explore the possibility of holding a walk in your community, please reach out to me. I'd love to talk to you about it!
Deborah Rios
National Member Services Director
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Our calendar has been overflowing with virtual events and opportunities to both learn and socialize, and now you'll begin to see in-person events coming back.
Be sure to check the Events Calendar on our website regularly! We add new events every week!
Here are our upcoming events you can participate in. Pre-registration is required for all local and virtual events.
Saturday, March 26, 2022
2:00pm - 3:00pm CDT
Virtual opportunity for those in the state of Georgia who want to connect with each other and walk away with lifelong friendships!
Saturday, March 26, 2022
3:30pm-4:30pm CDT
Virtual opportunity for those in the Dallas / Fort Worth area who want to connect with each other and walk away with lifelong friendships!
Sunday, March 27, 2022
2:00pm-3:00pm CDT
Book selection: "Daughter of the Deep" by Rick Riordan. There will be time for socialization after the book discussion.
Check the book out here:
Saturday, April 9, 2022
2:00pm-3:00pm CDT
Join for a time of us getting to know each other better with Brittani Laski. She is a woman with Turner Syndrome who is the current Chair of the TSSUS Board of Directors. She is a wife to her husband Jon and mom to her 1 year old puppy. Currently works as a Nurse Practitioner in Orange County, CA serving underserved populations. Let’s talk about our journeys, how we overcome obstacles & support each other.
Saturday, April 23, 2022
2:00pm-3:00pm CDT
Virtual opportunity for those in the state of California who want to connect with each other and walk away with lifelong friendships!
Sunday, April 24, 2022
2:00pm-3:00pm CDT
Virtual opportunity for adults with TS 55-ish years old and up to connect with each other. Meet some of our long time golden butterflies and walk away with lifelong friendships!
Saturday, April 30, 2022
2:00pm-3:00pm CDT
We would love to see your pet(s). We can't wait to learn your pets name, where you got your pet from, and what is special about your pet. You can dress them up or keep them in their original birthday suit.
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Around 90% of those with TS will experience ovarian failure resulting in a deficiency of the sex hormones estrogen and progesterone since these hormones are produced by the ovaries.
These important hormones can be replaced with medications. The term for underdeveloped or improperly functioning ovaries is hypogonadism. Hormone replacement therapy (HRT) is recommended for girls and women with TS who experience ovarian failure.
An endocrinologist is best suited to determine when to begin HRT for the sex hormones and once HRT is established, an adult endocrinologist, gynecologist or general practitioner may oversee HRT.
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The TSSUS Butterfly Society
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TSSUS is looking for 100 new Butterfly Society monthly supporters to join this exclusive giving society. Will you be one of the 100?
In the last two years during the pandemic, the TSSUS Butterfly Society monthly giving program did exactly what it was designed to do - the program provided reliable, predictable funding in a time of crisis and uncertainty. Because of the dedicated month-after-month donors who participate in the Butterfly Society, we have known where our line in the sand was financially. It was been a difficult couple of years, but it would have been so much more so without the ongoing and faithful support of or hero-donors both in the Butterfly Society and in general. TSSUS is in good position financially as we move in to more uncertain times, and we rely on our Butterfly Society supporters to carry us through.
What Is the Butterfly Society?
The TSSUS Butterfly Society in an exclusive monthly giving program where people like you sign up to give a monthly, recurring donation. This means each month through bank withdrawal or credit card transaction, your donation to TSSUS is automatically made on the same day each month.
We launched this program in July 2017, and we now have approximately 440 supporters enrolled.
Our goal is to have 1,000 supporters in the program by the end of 2023, so we need your support!
Are you a member of TSSUS, but perhaps you've never made a financial donation? Do you know that with just $10 a month, you will have donated $120 at the end of the year? Donating each month allows you to make a more impactful gift over time.
A free individual TSSUS membership is included at the $10/month giving level while you are an active participant! You can also upgrade your free Butterfly Society individual membership to a family membership for just $20.
Are you someone who attends TSSUS events, follows us on social media, and benefits from the webpage and resources we provide and didn't think you could ever be a philanthropist? This program allows most to participate.
We understand that not everyone can participate, and you are just as an important part of the TS community as those who can.
We also recognize many of you do have the ability to support our work financially, and we appeal to you to do that now if you're inclined and able.
For those of you who are Butterfly Society supporters - you are our heroes! You show us month-after-month that you value the mission of the Turner Syndrome Society of the United States, and that you are a partner in a secure and long-lasting future for the Society.
If you have supported the Butterfly Society in the past but are not currently enrolled, we encourage you to reactivate your support. You can do that by calling Becky Brown at 832-465-9388 or clicking the "Join the Butterfly Society Today" button below. Our goal is to reactivate 50 past supporters by the end of April.
Please take a moment to help us celebrate our current Butterfly Society supporters and consider becoming one yourself. For less than it costs to have Door Dash bring your favorite pizza, you can invest in the organization whose focus is to better the lives of all those with TS and their families through education, research, and support.
Becky Brown, National Director of Development & Communications
Mobile: 832.465.9388
becky@turnersyndrome.org
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Read "My TS Stories" on the TSSUS Blog
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Our Fraternal Twins with Turner Syndrome are Rare Butterflies - by Erica Drews
My name is Erica Drews, and I am a mother to fraternal twin girls who both has Turner syndrome (TS). My butterflies were born two months early and spent the first part of their lives in Neonatal Intensive Care.
They are now 3 years old and busy little butterflies! We have had a long journey, but these girls are resilient! Along with multiple TS health related issues like cardiac, horseshoe kidney, gastro issues (feeding tube), and dysphagia (trouble swallowing), they also have autism spectrum disorder (ASD).
We started early interventions at birth and are hoping to continue throughout their lives. I wanted to share our story because I am told how rare our case is. Our smaller twin (Isabell, 45X) was diagnosed at birth, but our bigger twin (Ellanor, mosaic) was not diagnosed until 2 years old. We were told she did not have the symptoms.
It is rare for fraternal rather than identical twins to both have TS because they were fraternal. It turns out we have TWO miracles on our hands! My butterfly babies are so strong, and they are the reason I want to fight every day to spread awareness and our story.
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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 online virtual 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, 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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