https://www.googletagmanager.com/gtag/js?id=AW-1013868583

2019 Turner Syndrome Retreat – Reserve your spot!

autumn retreat day trip, lake walk

We are excited to announce that we are hosting a Turner Syndrome Autumn Retreat again for you this September! We know how important it is to form lasting connections, especially with people who understand your story. This is the perfect opportunity to do just that!

What makes the Autumn Retreat special?

This is the first event of its kind – a chance for women & girls with TS and family members to come together, have fun, learn, and unwind surrounded by nature. The Retreat specializes in your needs, offering not just memories to last a lifetime, but skills and knowledge to help you manage your life with Turner Syndrome. The Retreat will provide a laid-back summer camp vibe, making sure everyone is comfortable to be themselves.

Who should attend?

Are you affected by Turner Syndrome? Then this weekend is for you! Women & girls with TS, parents, and family members are invited and encouraged to join us!

Read some reviews from last year’s Retreat weekend!

“Words cant adequately describe what an honor it was having the opportunity to be apart of such an amazing weekend. Even with the rain on Sunday the retreat weekend couldn’t have been more of a blast. I thoroughly enjoyed spending quality time with you and such a wonderful group of people. It really shows the impact that the incredible foundation you founded has on others. My head is still spinning after a life changing weekend.”

“I did walk away exchanging emails with a few other moms.  Great job serving the needs of others!  And thank you for the love that you put into it ;)” 

“[We] had a great time. We enjoyed the new friends we made and the scheduled activities.”

Andrea Levey

Levey, Andrea Eden

In loving memory of Andrea Eden Levey

Memorial Donations

 

Camping, Climbing, & Connecting: 2018 Turner Syndrome Retreat

“Words can’t adequately describe what an honor it was having the opportunity to be a part of such an amazing weekend.”

Friday night’s games, dinner, and campfire gave everyone a chance to get to know one another – setting the tone for a weekend full of connections and new friendships. On Saturday, the day started with a nature hike around the grounds of Camp Ockanickon. With perfect fall weather, this activity was a great way to stretch our legs before a morning of presentations. Special guests joined us to speak on topics like nutrition, bullying, research, and financial literacy. After lunch we headed back outside for games and a chance to climb the camp’s rock wall! Good job to the superstars who challenged themselves to give it a try! Finally, on Sunday we started the day with yoga and ended with the Team TSF Lake Walk. The weather didn’t hold out for us on Sunday, so those who wanted to stay dry inside enjoyed a rain party. The weather couldn’t stop everyone though – a few brave souls completed the 5K!

The scheduled activities made sure everyone had something to enjoy. However, the part we are most proud of and the real reason for hosting this event was to provide a space for women, girls, and family members to connect, laugh, and share their stories. We are so thrilled by the friendships we saw blossoming, the experienced advice we saw being offered, and the contact information being exchanged by the end of the weekend! We are sure this is not the last time many of these ladies will be seeing each other!

A special thank you to our sponsors Novo Nordisk, Pfizer, Genentech, and Manasquan Bank for supporting this event. Also to Wawa, Goddess Garden Organics, and Simply Soothing for providing supplies. And finally to Sarah Barnes of the Children’s Hospital of Pennsylvania, Gina Soares of Investor’s Bank, Ellen McSpadden of Cheerful Chatter, and Julia Keklak of The Coriell Institute for volunteering your time to share your knowledge.

“My head is still spinning after a life-changing weekend, and I am so looking forward to having the opportunity to get even more involved with the Foundation.” 

Support TSF to give more girls and women the opportunity to attend life-changing events like this one in the future!

How I handle my anxiety

By: Josey Petz, TSF Volunteer

I am sure not many of you know this, but women with Turners Syndrome can easily develop anxiety. I definitely have had anxiety for as long as I can remember. I am constantly worried about what other people think of me or if I am being too weird. The second they quit responding (because they’re busy) or their body language changes I immediately think it is because they don’t like me or are mad at me. I automatically assume people don’t like me right off the bat. I am a social person so I like being around people, but my anxiousness makes me awkward and then I completely shut down and don’t talk to anyone.

After years of dealing with it, I finally went to get help. I was a junior in college when I needed to get an internship for the summer and I was just beginning my search for one that was basically nonexistent or already filled when my anxiety got so bad it was almost crippling. I was lashing out at everyone because I was stressed by stress only I was putting on myself. No one wanted to be around me and I was crying all the time. Talking about it with my counselor helped me process why I was having anxiety, which helped. Knowing why can help prepare you for triggers.

A big trigger I knew was coming was when I was about to graduate college and had to decide what I was going to do next and begin my “big girl” job search. I tried my best to handle my anxiety about the unknown and impending adulthood I was about to face, but like most I had good days and bad days. This is how I handled it:

  • Take time to be alone and get your mind off whatever is giving you anxiety. When I am getting super anxious over something I try to go for a run or watch something funny on Netflix. I just like to do something that makes me happy and that will keep my mind from racing and overthinking the situation.
  • I talk/write about it. I have a journal that I would rant in when I was freaking out about something. It not only helped me process why I was feeling the way I was, but it also made me feel better to get whatever was bothering me off my shoulders. Writing helped me get to know myself, which helped even more with learning triggers. Sometimes I would call someone I trust and vent to them. It always feels good to get whatever is bothering you off your shoulders.
  • I meditate. There is an app called “Calm”. It has meditation sequences that help bring you back into the moment and relax. Meditating helps get me out of the negative head space, too. I like to use a little bit of lavender essential oils while I meditate because the smell also helps your mind calm.
  • I do the four method of breathing. My counselor taught me this method of breathing that helps your mind calm and stop racing. It’s where you take a deep breath in for 4 seconds, then out for four seconds and repeat that sequence four times. I cannot tell you how many times a day I do this when I feel myself getting worked up.
  • I listen to my favorite song. I don’t know about you, but when my jam comes on I instantly get into a better mood. It relaxes me and makes me happy, which helps calm my mind down. Singing along to my favorite band changes my entire outlook on the day.

I hope these tips can help ease your anxiety. Find what works for you and go for it. I know when you’re in the heat of the moment it can be hard to stop panicking and remember to begin doing calming exercises. Knowing your triggers and signs that you’re going to freak out helps because you can preemptively try to stop your anxiety before it gets too bad. So, pay attention the next time you have an anxiety attack and reflect on what caused it and how to avoid it the next time.


Learn more: https://turnersyndromefoundation.org/professionals/educators/learning-2/social/

NEXT STEP:

Do you have a passion for blogging/writing? Join the Turner Syndrome Foundation as a volunteer. Complete the form at the link below:

https://www.jotform.com/tsfusa/volunteer-application

Leave your comments below. How do you handle your anxiety?

 

 

A mother’s lament. A heartbreaking truth

October is National Bullying Prevention Month, an issue that affects everyone without discrimination. Here is a mother’s lament on the bullying of her daughter. A heartbreaking truth for many. This is an email sent to a superintendent of schools:

“This morning I notified the principal that my daughter is being bullied by a classmate and made to feel unsafe especially during unstructured times at school. This is not the first time, nor is it the first person. As a parent, I say enough is enough.

In my January meeting with Dr. Social Worker and Mrs. Teacher, I mentioned the girl by name. I assumed that after providing this information the nasty comments and bullying would change, but it has not.

Yesterday during the assembly, my daughter was sitting on the floor with her legs folded and the girl turned around twice and squeezed her thighs with both of her hands. My daughter expressed that she feels badly and made to feel unlikable. She doesn’t do anything about it because she doesn’t want to get in trouble and be sent to the principal’s office. I explained that no one is allowed to touch her and that she has the right to hold her hand back from touching her and tell her, NO! I ask that the principal, teachers, classroom aides and the lunch aide be made aware of this situation.

My daughter should feel safe to learn and express herself in school.

Apparently, popular in school equates to meanness. How very sad that my daughter is the target of such unfortunate behavior. I want this matter addressed immediately. Please advise the steps that will be taken to correct this problem.”

If enough is enough and you want change, please sign the petition bringing awareness to Turner Syndrome. 

Petition for Turner Syndrome Awareness

Learn more: https://turnersyndromefoundation.org/professionals/educators/learning-2/social/

SHARE YOUR STORY to RAISE AWARENESS & SUPPORT

LEAVE YOUR COMMENTS BELOW

Autumn Retreat 2018

To save an image: Click to enlarge, then right click and select “Save As.”

Introducing: Turner Syndrome Council on Cardiology

Introducing a New Turner Syndrome Foundation Cardiovascular Health Initiative

Cardiovascular health is a major concern for many people. Heart disease is the number one killer of women in the United States, with cardiac issues leading to death in 1 in 4 women. Given the high prevalence of heart disease among women of the general U.S. population, cardiac concerns among Turner Syndrome (TS) patients are even more striking, about 25-50% of TS patients suffer from some sort of heart problem.

Every day, lives are lost to the cardiovascular issues present in Turner Syndrome. To combat this issue, the Turner Syndrome Foundation has organized the Turner Syndrome Council on Cardiology (COC), a council of industry leading professionals to address the complex cardiovascular issues of this vulnerable population. The COC seeks to tackle the gaps in diagnostics, treatments, transition, emergency episodes, and preventative cardiac care. It is our goal that specialists will become knowledgeable on the components of cardiovascular health that affect Turner Syndrome patients in order to find the best care approach, ultimately reducing the high mortality rate.

This project honors all the precious lives that are burdened and lost due to cardiac problems. It is our mission to prevent further suffering and loss by equipping allied professionals with the armor of knowledge and resources to optimally address cardiovascular issues in Turner Syndrome patients.

The COC can only be possible with your contribution. You don’t have to be a doctor to save lives, your support is highly important and needed to reach optimal results. The hearts of these amazing girls and women are dependent on you. Please support this initiative joining the COC Campaign.

Council on Cardiology Campaign

Our most sincere condolence to the friends & family of Turner Syndrome woman, Andrea Eden Levey, who passed away on Thursday, October 4th, 2018 from complications of aortic dissection.



Professional interest in the COC? Please submit a form below.

Rally for Medical Research

Advocating for Turner Syndrome is very easy: Put on a good pair of shoes, meet up with the group and tell your story!

Join us at Capitol Hill on September 12-13th and meet legislators to raise awareness and advocate for Turner Syndrome.

SIGN UP: https://www.jotform.com/tsfusa/2018-rally-for-medical-research-wdc

Rally for Medical Research 2018

 

 

A Stellar Video: This is my story

Eager to spread awareness of Turner Syndrome, Stella decided to share her Turner Syndrome journey. This courageous and beautiful young lady is making a difference. Watch her video, read her story and be inspired! 

Don’t let anyone discourage you from being the best version of yourself. Turner Syndrome does not limit you to be great, and like Stella said: “it’s very easy to prove [anyone who disagree] wrong.”

You can learn more about Stella’s story at the link below.

CLICK TO READ STELLA STORY

NEXT STEP:

TAKE ACTION. Interested in getting involved? Email volunteer@tsfusa.org or call 732-847-3385 for assistance.

What’s your plan of action after receiving a Turner Syndrome diagnosis? Leave your comments below, navigate through the “PATIENT” information tab.

Back to School Guide

Back to School

It’s that time of the year again – summer is coming to an end and parents are getting their children ready to go back to school. Every student follows a similar checklist such as buying new notebooks, packing up a backpack, and reviewing their new schedule. For Turner’s girls, adding a few more things to that checklist can help ensure that the school year goes smoothly.

Turner Syndrome is characterized by learning issues, which can include visuospatial organization and math abilities. It’s important that educators, school psychologists, and school nurses are aware of the implications in the classroom and are prepared to collaborate for the best outcome.

To help you with the transition of returning to school this year, we’ve created two guides! For older students, we have the Back to school Survival guide,” which features a checklist of items you may have forgotten – like checking in with your school psychologist or purchasing your Emergency Contact Card! This is especially great for students making the transition to a new middle or high school!

For younger students, we have the Super Student Adventure Guide Going back to school doesn’t have to be a negative experience and this guide will help make it fun! With a superhero printable to color and kid-friendly checklist, going back to school this year can be an adventure!

Be sure to check out our website for more learning resources at https://turnersyndromefoundation.org/professionals/educators/learning-2/

Encourage your teachers to visit, too, to ensure they have all of the knowledge necessary to assist your student!

Good luck this year! We hope it’s the best one yet!

Question? Contact info@tsfusa.org or call 732-847-3385 for assistance.

X