Happy Summer!
We invite you to keep up with opportunities through email, our website calendar, and our Facebook page and groups. Deborah, Becky and I have been working on some great events coming up, as well as several projects simultaneously. Here are some highlights:
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Last week the Lymphedema Act advanced to the next phase which is good news for those who would like insurance to pay for medically necessary lymphedema compression supplies. Lymphedema is common in Turner syndrome across the lifespan. Learn more about it HERE.
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The TS Research Registry has over 1,000 Participants!
Thank you to all 87 of you who joined the registry this July! Think of your information as a key, a puzzle piece, or a brush stroke that brings us closer to learning more about TS.
We now have 1,087 people in the registry and 73 of them have genetic sequencing data available, too. It represents those born in the 1940’s through the 2020’s, and individuals from 29 countries (Argentina to South Africa). The Scientific Advisory Board will be updating the survey to make it more applicable to young children as well as adults. The next study will focus on identifying specific areas of parental supportive care needs that are most evident within the Turner syndrome community. Please join the registry to ensure your perspective is heard!
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400 people responded to last month’s TSSUS survey about the TSSUS services that are most important to you. In general, half of you said health information was most important, while half named community support as the most important.
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Social zoom connection calls this month! In May, 225 people registered for the Zoom Generational sessions. We’d love to see you in July. Register fast, as these are happening THIS SUNDAY, July 24th. Register Here.
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Virtual TS Days registration begins August 1st. We are looking forward to offering everyone an opportunity to experience a small taste of a TSSUS conference experience. Spend your weekend with us online and skip packing your bags! Session descriptions are now on the TSSUS website HERE.
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A new TS clinic in Los Angeles, California is opening in August 1st.
Have a great Summer and stay cool!
Cindy Scurlock, President/CEO
Turner Syndrome Society of the United States
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TSSUS National TS Days
Registration Opens August 1st
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Registration opens
on August 1st
for our biggest virtual event EVER! The National TSSUS TS Days Virtual Experience is happening on August 27-28, 2022, and it's all on Zoom! This event will be our version of a virtual conference, and it will be affordable enough for everyone to attend. tickets are $39 each.
TSSUS will offer scholarships to those who have a financial need so no one if left out.
We have a great program planned for you! You can read about the confirmed sessions and presenters on our website. Many of the most knowledgeable TS experts will be presenting. This is a unique opportunity for you to get just a taste of what a TSSUS National Turner Syndrome Conference is like, and our hope is that you come away from it with a better understanding of the condition, some new friendships, and a renewed dedication to preserving your health and well-being.
This event will be educational, informative, and fun for all ages. You'll have the opportunity to participate in the TSSUS virtual KABLOOM Karaoke Event! We're going to learn AND we're going to have some fun!
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.
The 2023 TSSUS National Turner Syndrome Conference will be in Houston, Texas from July 14-16, 2023. More information will follow, and registration will open in early January 2023.
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Seeking Panelists with Turner Syndrome
for TS Days Virtual Event Session
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One of the sessions during the TSSUS National TS Days Virtual Event will be
“Insights and Advice Throughout the TS Journey"
TSSUS is seeking 1 panelist for each adult age group to offer insight as related to having Turner syndrome. We are excited and interested to hear from experts about living with TS - YOU!
If you are interested in becoming a panelist or TSSUS quoting you, please respond to this email with your answer the following questions.
- What is the most important advice you would tell your younger self about having Turner syndrome?
- What is your age?
We are looking for panel members in their 20's, 30's, 40's, 50's, and 60+.
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Get Your TS Days T-shirt while supplies last! |
If there's not an official TSSUS
t-shirt for it, did it really even happen?
The TSSUS National TS Days event t-shirt is available now in our online store.
Get yours while supplies last!
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Ellie Bekkerus is a TS Super Star! |
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For several years, Elie Bekkerus, a young girl with Turner syndrome, has been raising funds for TS Awareness since she was 5 years old. Every year, she creates a fundraiser to benefit the Turner Syndrome Society of the United States.
Her parents, Kaylie and Paul share this:
Our hearts are so full knowing that Ellie has such an amazing support
team behind her! Her heart is beaming tonight as she officially surpassed
her $1,000 goal for this year. That means, this kid has raised over $6,000
for the Turner Syndrome Society since she was 5!! Only $4000 to go
before she reaches her goal of raising $10,000 before she graduates.
A huge, huge, HUGE THANK YOU to everyone who has helped her
make this happen!
Thank you for everything you do for TSSUS and the TS community. Ellie. We appreciate you.
Read the local news story and watch the video about Ellie here.
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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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Gender and Turner Syndrome
Can Males have TS?
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After years of discussions, debates, and heartfelt concern, the TSSUS Scientific Advisory Committee has released the following letter to the TS community.
We will summarize your questions and comments and address them next month. The letter is below.
The Turner Syndrome Society of the United States’ Scientific Advisory Board is reaching out to TSSUS members and the TS community to advocate for the health and well-being of all individuals with a 45,X cell line. Everyone diagnosed with Turner syndrome (TS) has a deficiency of the second sex chromosome, which in genetic terms (karyotype) is called 45,X. Studies have shown that all those with a 45,X cell line are at risk of congenital heart disease, short stature, infertility, and other associated health concerns.
Throughout the years, females with a 45,X cell line have been actively recruited to participate in many studies, and their participation has led to great advances in our understanding of the health of females with these chromosomal findings.
Through the strong participation of our community in Turner syndrome research, clinical guidelines (Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome), were developed that helped to improve the overall health and well-being of our members and the greater TS community. These Turner syndrome clinical practice guidelines serve to educate physicians and other practitioners on the care of our community and serve as a standard of quality care.
However, there is an increasing number of males who are being diagnosed with Turner syndrome. Unfortunately, there is no clear guidance on how males, those who are intersex, and those across the gender spectrum with a 45,X cell line, should be cared for. This group includes people who have 46,XY (male) genetics. How will they access needed routine cardiac, kidney, reproductive, autoimmune, or endocrine screening unless their healthcare providers have clear guidelines to follow for their care? The concern is that they may go without necessary treatments or not qualify for insurance coverage of recommended testing or medications. Because these individuals may suffer from a lack of appropriate health surveillance and treatment, they need our community’s support.
It is common for individuals with 45,X cell lines to learn of their chromosomal differences when undergoing evaluations for infertility or short stature. However, more and more of these differences are being identified through maternal prenatal testing at a time when biological sex is not established or remains fluid. Individuals with 45,X cell lines and their parents are often frightened and uncertain as to what the future may hold, and many reach out to TSSUS for guidance and support.
TSSUS can be a strong and effective advocate for the wellbeing of all those with 45,X cell lines. Together we can advocate for everyone to receive quality and comprehensive care. We welcome your thoughts, comments, and ideas on how to move forward to offer our support.
Simply respond to this email with your comments.
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TSSUS Turner Syndrome Research Registry (TSRR) |
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The Turner Syndrome Research Registry Report
TSSUS would like to extend a huge thank you to the 8 members of the TSSUS Scientific Advisory Board for meeting each month and collaborating to advance TS research through the Turner Syndrome Research Registry (TSRR). On April 17, 2022, more than 700 registry participants were sent an updated health survey to fill out with their current health information.
Have you ever thought or said, "There needs to be more TS research?" If you have, are you yourself contributing to TS research by entering you or your minor child's information in the TSRR? This is your opportunity to contribute and advance TS research, and it will only take about 20 minutes to complete.
Please learn about and join the registry and contribute to TS research. The Scientific Advisory Board members fully review and approve each research application and require researchers to share the data they obtain with other TS researchers. We value your time, and you are allowed to opt out at any time but hope you don’t because each person’s health information supports the whole process.
A publication about TS and the significance of the bicuspid aortic valve was released weeks ago that was reliant upon TSRR data, and the registry is currently supporting a study about learning and behavior in TS.
Last month, whole exome genome sequences were added to more than 150 participant registry records collected from a cardiology study by Oregon Health Science University (Cheryl Maslen, PhD and Michael Silberbach, MD- researchers).
There does need to be more research on Turner syndrome, absolutely! But it's going to take your participation to drive things forward. Please consider supporting current and future TS research by becoming a part of this potentially monumental endeavor.
Registry applications and information about the registry is available to researchers interested in Turner syndrome and wishing to apply to access data from the 1000 records within the registry.
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A Mother's TS Story by Crystale Klutcsh |
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Maybe it’s time I share our story. I found out very early that I was pregnant with my daughter. I knew I was pregnant almost immediately and also knew she was a girl, even though my family all thought I was crazy. We did the genetic blood testing as early as possible because I am older and had some worries.
The first genetic test said Turner syndrome, so they had me repeat the blood work, which also said TS. We were then given an option to do amniotic testing at around 15 weeks gestation. Let me tell you, that was scary and also painful, but I would do it again because it gave us a real answer so we could move forward on how to prepare for our girl. The amniotic test was also positive for TS.
I had never heard of Turner syndrome before; the little information from maternal fetal health (MFH) doctors was frightening and we were so uncertain with what was happening. MFH referred us to the Turner Syndrome Society of the United States website. I read and read and read and googled my brains out (which I hate googling because you can literally find any answer you like online if you look). This, of course, overwhelmed and scared me more.
I resorted to only reading the Turner Syndrome Society page. I wondered what was going to happen and if we would even get to keep her and for how long. I ended up calling the counselor on the Turner Syndrome Society page and this is where everything changed for me.
The counselor answered my call after 5pm in Alaska standard time! I couldn’t believe it. I was crying and completely lost. This godsend (Deborah Rios) sat on the phone with me for about an hour and calmly answered all my questions and gave me insights. The biggest thing was- there’s hope. My daughter had options for medical interventions for the scariest of our concerns - heart problems, growth problems, infertility, horseshoe kidneys, etc.
But most importantly she said “no girl with Turner syndrome has every problem that could arise from TS. There is a list of problems associated, but she could have one or two or six, but not all of them." I don’t know why that was soothing, but it was. Knowing what we could do to support her was so important to hear.
I joined a bunch of TS groups on Facebook and read stories every day and asked lots of questions, even about the inconsequential things. I just absorbed every last bit of information I could. I found so much relief from reading other people's stories about how their daughters fought against the odds and now are thriving, young adults. I also cried reading about the mothers who lost their babies early, but held onto that hope.
Initially, all the doctors warned that it could go either way. She could make it to full term and be fine with minimal problems, or she may not make it much past 20 weeks or a few months after birth, depending on which conditions she obtained.
The word 'abortion' was in conversation between myself and the doctors and my husband. Something that I never thought I’d have to consider, (though I am thankful to have had the option), and found out through our journey that it’s something I could not do or handle emotionally (but I support all of you ladies in your decisions).
I should note. This was a discussion because we wanted to be prepared on what to do depending on what condition she was in. Like, at what severity of her health and possibly deteriorating health would we make this decision, if at all? I don’t want anyone to misconstrue our story. In no way was the single diagnosis of Turner syndrome a reason for us to consider abortion. Just a moment where we threw all possibility’s on the table (both health possibility’s and possible interventions) and when and how would we gauge our decisions against our options for HER.
All of our extra maternal fetal health ultrasounds went extremely smooth. We had one at 20 weeks, 30 weeks and 34 weeks. She somehow did not have any visible growth delays, no visible heart conditions, and no hygromas or swelling. They continued to say “I would not know this is a baby with Turner syndrome by ultrasound”.
We did not tell most friends and coworkers we were pregnant until after the 20 week ultrasound because we didn’t want to get our hopes up if she wasn’t going to make it. But let me tell you, when the 20 week ultrasound looked good, it was the first time we noticed we could finally feel excited about our pregnancy, and we told everyone!
Our girl showed up on her own 5 days early on the 13th of February. Hahaha! The 13th was the only day I joked that I didn’t want her to pop out on, for superstitions on the number 13. But this girl has had her own plans since day one. She is as feisty as sin and had an amazingly sweet personality right away.
In the hospital, they did an echo on her heart, ultrasound on her kidneys, and blood work for karyotype testing to see exactly what her genetic alterations were. The kidneys are perfect! Phew. Her heart was not. She had 3-4 visible problems: fluid around her heart, a vessel that didn’t close at birth (which normally does), a bicuspid aortic valve, and possible aortic narrowing concerns. Things were suddenly scary again.
We stayed in a town near a hospital so she could be rechecked 3-4 days after birth for a repeat echo. The valve that normally closes at birth did finally close (which, as it turns out, sometimes takes around 3 days). The closing of the valve also alleviated the excessive fluid. The narrowing of the aorta was a concern because when the valve closes sometimes the webbing or mesh around it pulls the aorta branch tightly - this did not happen. So, she does have a bicuspid aortic valve, which is rechecked at 6 months, and if it still functions well, we move to yearly checkups. The heart doctors mentioned many times- lots of people, even those without TS, have this and never know and live long lives. We have endocrinology with a blood draw at 6 months too - just to watch for other hormonal problems.
Our karyotype blood work results came in and we requested counseling from the genetic counselor in Washington Children Hospital. They were able to see us through video teleconference because we live so far away. This counselor was amazing! No rushing us, answered all my questions (which I wrote down as they came up before the appointment). I wrote down her answers too, because I get so overwhelmed with appointments while they are happening.
The genetic counselor said her results do unfortunately show that she could never have children without interventions. We will have to consider alternate options for her, one of which is to collect her eggs before puberty and store them for her. She can carry a child, just won’t be fertile come the time she’s ready. She also is likely to have growth problems, but not 100% will. The geneticist said with her karyotype, almost all people with the same results have growth problems. I should note for any new people to the group that growth hormone shots are not just to help girls with TS reach closer to their potential height, but it is also essential for bone and organ growth and development. And the taller the parents are will slightly increase the daughter's potential height.
Let me tell you parents, I know my story is long. But I debated ever sharing for privacy reasons. But then I thought of how much everyone else’s story meant to me and how much it helped me through some dark and confusing times in my pregnancy. And maybe our story could help others.
I know not all stories will take a path as easy as ours, I say this because I definitely have seen and read stories in these groups where parents and babies are fighting a much bigger journey against even bigger odds. I hope this story brings a little peace and comfort to a pregnant mother out there. Not knowing what the future brings can be the hardest.
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TSSUS Offers a Huge Array of Virtual and
In-Person Events
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Our calendar is literally overflowing with virtual 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, so check the calendar often!
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.
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Generational Zoom Rooms Happening THIS Sunday! |
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Sunday, July 24, 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!
Sunday, July 24, 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!
Sunday, July 24, 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!
Sunday, July 24, 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, July 30, 2022
1:30pm-3:30pm PST
We hope you will join us to meet others in the Western Washington state area. This in-person opportunity is open to anyone in the local community. Come make some new friends and catch up with old ones.
Saturday, August 20, 2022
10:00am - 1:00pm PST
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, August 20, 2022
3:00pm-4:00pm 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. Come make some new friends and catch up with old ones.
Thursday, August 25, 2022
12:00pm-1:00pm EST
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.
Saturday - Sunday, August 27 - 28, 2022
12:00pm-4:00pm CDT
The two-day event offers something for everyone! Virtual TS Days is an opportunity for the TS community to learn about Turner syndrome from TS experts. Sessions include medical and wellness presentations and each session will allow for a Q&A time (through the chat function). Unanswered questions will be submitted to the speakers and panelists and a Q&A summary will be sent to attendees soon after TS Days are over.
The registration fee of $39 allows access to all sessions on both days, including the karaoke party. The lobby area allows you to meet and find other attendees and you can visit the expo area too. You may join and leave at your convenience throughout the weekend.
To participate in the virtual TS day, you will need a Zoom account. To create a free account go to https://zoom.us/signup. If you need assistance in creating an account, please contact Deborah at 832-912-6006.
Registration Opens August 1st
Sunday, September 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!
Saturday, September 24, 2022
2:00pm-3:00pm Mountain Time
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, September 25, 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.
Saturday, October 1, 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, October 15, 2022
2:00pm - 3:00pm EST
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We hope you will join us to meet others in the PA area. This Zoom opportunity is open to anyone in the local community to have the chance to meet others in the area.
Sunday, October 29, 2022
9:00am - 12:30pm CDT
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.
This year, the home-office walk will be both in person and on-line! If you live within travel distance to the Houston area, we would love to see you in person. If you are from a part of the country where there is no local TSSUS Chasing Butterflies Walk, we hope you will join us on-line and help make this the most successful TSSUS walk fundraising event ever! Everyone is invited to take part in this fun event.
If you plan to attend in person, we are looking for volunteers in various ways. Please take a moment to sign up to help out by clicking on the link below:
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Walk Training and Information ZOOM Meeting |
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Would you like to find out more about how to successfully host a TSSUS Chasing Butterflies Awareness and Fundraising Walk in your local area? We are always looking for people who would like to work with us to coordinate a local event in your community.
Are you a current or past walk coordinator? We'd love you to join us to share you tips and suggestions with others who may be wanting to host a walk.
This Zoom meeting will be equal parts training, question and answer, and FUN! We invite
everyone who is interested in the walk program to join us.
Date: Saturday, July 30, 2022
Time: 2:00pm - 3pm
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Thank you for Supporting 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.
Many of you signed up recently for Amazon Prime Day, and we appreciate it. 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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As we emerge from the worldwide pandemic and teeter toward economic recession marked by near double-digit inflation, we encourage you to join the TSSUS Butterfly Society monthly giving program.
While TSSUS remains in a solid financial position, in large part because of our most dedicated and committed supporters in the TSSUS Butterfly Society, any economic recession creates an abundance of caution for charitable organizations like TSSUS.
It was difficult these last couple of years, and 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. We simply could not have done these last 2.5 years without your support, and we are grateful for your continued confidence and commitment.
As inflation continues to rise and the threat of a full-blown recession looms, TSSUS remains steadfast in bringing you the latest information to advance your health, as well as rewarding programs. opportunities to connect, and access to important research. As we continue to navigate through more uncertain times. We continue to rely on our monthly donors in the Butterfly Society 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 460 supporters enrolled.
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 100 past supporters by the end of September.
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.
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TSSUS New Generations Chat's are a HUGE Hit! |
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Last month, we launched our new Generational Zoom Chats and you loved them! These strictly social Zoom rooms allow people with TS of similar ages to come together to chat, make new friends, share experiences, and support each other.
If you check the events listings above and the official TSSUS Event Calendar on the TSSUS webpage, you'll find more information and the registration links on these exciting new FREE Zoom get-togethers.
If you'd haven't signed up for one yet, please do! They're free, and everyone is welcoming and nice! We hope to see you there.
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Get your TSSUS Butterfly Merch in Our Online Store |
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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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