Attend the Patient Workshop in California!

Cedars Sinai Workshop

Join the Department of Pediatrics at the Cedars-Sinai Medical Center in Los Angeles, California for a Turner Syndrome workshop! This workshop will take place on January 9, 2020 from 12:30 to 2. It features lectures by Dr. Michelle Schwieger and Dietician Nicole Maharaj on topics including hypertension and nutrition. These clinicians have expert knowledge in their fields and on Turner Syndrome. There will also be a “design a grocery bag” activity to take part in.

RSVP by January 3, 2020 by emailing Paula Glashausser, LCSW, at Paula.Azouri@cshs.org or calling 310-423-2417.

Workshop Location:

Cedars-Sinai Medical Center, Steven Spielberg Building

8723 Alden Drive, Suite 259, Los Angeles, California 90048

View our calendar of events to stay up to date on things happening across the nation!

Health care providers deserve a thank you

November is the month as well as every month that we are grateful for our health care providers. Each and every day girls and women are affected by Turner Syndrome. It is very difficult for those with Turner Syndrome to find health care providers who have dealt with Turner Syndrome before. Since this is a condition that does not have a lot of spotlight on it, many doctors don’t seem to know how to help those who need it. As for those who know about this condition it becomes significant to those with Turner Syndrome.

The health care providers who have knowledge of Turner Syndrome can be very impactful to those who have Turner Syndrome. Health care providers are so important to our society. They provide us with self care in ways that we can’t provide for ourselves. Today and everyday we are grateful for those who put their time towards finding a way to help those with Turner Syndrome and for that we are so thankful for their help.

If you have ever had a positive experience from a health care provider let us know your story at this link. This will give us the opportunity to show them how thankful we are and provide other TS girls with this information. Thank you for being thankful with us!

A Thanksgiving Note of Thanks

coming out turner syndrome diagnosis

by Katie Steedly Curling, PhD, Writer & Guest Blogger for TSF

Buddhists say be grateful to everyone and everything. Gratitude for things like our best friends, our families, chocolate, high thread count sheets, and bubble bath is easy. Gratitude for challenging people and situations is tough. It requires a lot of patience and practice. When living with a chronic condition like TS, bracing for the next health issue can feel constant. “Thank you” might be the last words you want to utter. I want to flip the pain and fear script. Would I have chosen to have TS? No. Given that I do, I choose to live positively.

I am truly grateful for TS.

TS is a major cause of miscarriages. Simply being alive on this earth is statistically improbable for people living with TS. That fact startles me every time I am confronted with it. That reality teaches me that each day is a true gift that is meant to be fully lived. TS frames small and big things with a sense of wonder and possibility. In a world where we can live at a full throttle pace, TS teaches me the value of slowing down. I am grateful for that.

I possess a “watch me” attitude that has repeatedly defied odds, proven naysayers wrong, and built strength that I might not have otherwise known without TS. I did not let my diagnosis define my life goals. I did not let test scores, that were never very good, determine what I want to learn. I did not stop creating just because it takes me a little longer to create. I did not stop dreaming because people like me were not supposed to dream. Several times in my life I have felt like steel – able to do anything I put my mind to. I am grateful for TS steel.

TS has also given me a profound sense of compassion and empathy for others, and an abiding belief in the value of our differences. Having always been different, I understand the battles all people face more completely. Telling my TS story has made me aware that everyone has a story. From there, our differences are strengths. We are on this journey to see and be seen; to love and be loved. TS is a reminder to be gentle with myself and others. That is a good thing to remember.

As you sit down this month to give thanks, consider the way in which TS has touched your life. Think about all of it. Think about how your life has been impacted by TS for better and worse. Write your own story. As you write your story, consider gratitude.


Sharing your story takes courage. Finding gratitude within the difficult moments requires practice and patience, as Katie mentioned. However, choosing to do both can help you live positively and connect more deeply with the TS community. We invite you to share your story this holiday season and find gratitude for you TS journey.

Three Women Connected by TS

turner syndrome women connection

Laura Fasciano, Dawn Petr, and Lori Kobular, are friends, mothers, volunteers, and TSF Board Members. But they weren’t always united over the common goal of making a difference for all women and girls affected by TS. Turner Syndrome, a condition often seen as rare and random, influenced on each of their lives in a major way. Their story demonstrates how closely linked the TS community really is and the impact we can all make when we choose to come together to support this cause.

Dawn

I knew Lori before I met Laura. We were both Creative Memories consultants, an online scrapbooking store, and I loved to go to her house to play with all of her scrapbooking tools when meetings were held there. I was aware that her daughter dealt with some medical issues, but I did not know what. She was always very happy and friendly when I saw her, and seemed to love people. 

I met Laura some time later through a social club in town, where she organized many events and meet-ups. When she became less involved, I learned that her daughter had been diagnosed with a medical condition, which I later found out was Turner Syndrome, and they could not find proper information and care.  

Shortly after, I heard Laura was starting a nonprofit organization, the Turner Syndrome Foundation, to tackle these issues so that her daughter and other girls could find the care and information they needed. Some time later, I went to Laura’s home (at the time it was also the TSF office!) and she told me ALL the things she was doing. It was an overwhelming amount of information to take in and I was impressed. I knew Laura would need a dedicated team to fulfill TSF’s life changing mission, so I said, “You need help.” I signed on for a massive unpaid part time job over the next several years. She brought me up to speed on nonprofits, Turner Syndrome, and the Foundation’s needs and activities. I put a lot of technology into place to facilitate TSF’s work. 

Meanwhile, I kept in touch with Lori via Facebook. At some point I shared information about TSF. Low and behold, I found out about Lori’s daughter’s medical condition – Turner Syndrome. I was shocked that this “rare” condition affected the daughters of two friends met at different times and different places. I immediately recognized the need for greater research to investigate if TS is as random or rare as it is thought to be, and was glad to have become involved in TSF. In no time, Lori joined TSF as a volunteer and put together a successful scrapbooking fundraiser.

Lori
turner syndrome women connection

My daughter, Julie, was born in 1987 and diagnosed with Turner Syndrome at six weeks old. Throughout her childhood, and still to some degree, I struggled to find the answers I needed to help Julie live a healthy, happy life. Around 2000, Dawn and I became friends when we were on the same Creative Memories Team, but I did not share Julie’s diagnosis. Years later, I saw a Facebook post by Dawn about working at the Turner Syndrome Foundation. I was going to a fundraising event and Dawn’s post inspired me to fundraise for TSF. I contacted Dawn with my idea, never expecting to be in charge of running an event. After speaking with Laura, I realized how important donations are because they directly contribute to the longevity and growth of the organization. If I wanted to see real change for my daughter’s sake, I needed to play a role in what TSF was capable of. I decided to host a fundraising scrapbook event to benefit TSF.

After running the event, I wanted to do more. I hosted an Awareness Blog Hop with my design friends during the first week of February, Turner Syndrome Awareness Month. I had over 40-design team members participate by making a card with the theme “TSF Together.” With designers from all over the world, the Blog Hop became an incredible opportunity to raise awareness of Turner Syndrome and donations for TSF. The Blog Hop is now an annual awareness fundraiser. You can find information about the 2020 Blog Hop at https://myturnersyndromejourney.blogspot.com/2019/02/its-girl-thing-turner-syndrome.html

“I realized how important donations are because they directly contribute to the longevity and growth of the organization. If I wanted to see real change for my daughter’s sake, I needed to play a role in what TSF was capable of.” 

Laura

The incidence of TS is 1 in 2,000 but when you see our connection, it makes the number more of a reality than a coincidence. After all, how could one board member befriend two women with daughters who survived Turner Syndrome? As unbelievable as this is, it is even more incredible what otherwise ordinary people can accomplish when they collaborate to solve a problem. I am forever thankful to these women and all who dedicate themself to supporting this mission. The work can be difficult, but the friendships irreplaceable and the future promising. Together, we make a difference!

Give now to support TSF’s fundraising campaign. Can you help us reach our goal of $100,000 before the year ends?

Help Us Raise Awareness in Every State!

Our goal for 2020’s February Awareness Month is a big one- we want to raise awareness of Turner Syndrome in every state! We hope that outreach to communities across the country can develop so that women and girls in every corner can see that there is support available to them!

There are several actions you can take to help us with this goal, but let’s jump straight to the most important one for now:

An awareness event in EVERY state

That’s right, our goal for 2020 is to see an event happening in every state throughout the month of February. Any event, big or small, that has a focus on TS awareness will take us one step closer to our goal! Join us this February by hosting an event in your state, or teaming up with others in the community to co-plan an event. A great way to meet others to collaborate with is via our state Facebook pages.

Planning an event can be simple. Here are some ideas:

…and, the list goes on! The options are endless, and many take very little organizing. Don’t let your state be left out in this year’s Awareness Month! Help us start 2020 strong by raising awareness in every state!

 Keep reading to find out how we can support you, and learn about an extra perk of organizing an Awareness Event.

So... how exactly do I host an Awareness Event?

We are so glad you asked! Once you decide to plan an event, let us know on our website so we can work with you on planning and add it to our calendar and map to inform others to save the date. We will send you all the materials you need for outreach like posters, social media images, information pamphlets, and more, so you are equipped to raise that awareness! Be sure to follow along on Facebook to see our progress.

If your state already has an awareness event planned for February, please don’t let that stop you- the more the merrier! Or, consider teaming up with the event organizer to develop your state’s event even further.

The more events and the more awareness we can raise, the better!

You could WIN some TSF merchandise!

As if raising awareness of TS and connecting with the community aren’t enough incentive, the first event organizer who registers will automatically receive some TSF merchandise to rock at their event. Plus, one other lucky event organizer will also win some merch! By registering as the event organizer you will be entered into a random prize drawing. The winner will be drawn at the end of January, and the items will be shipped to you, on us.

Help us add some color to the map by registering your event! Let's see which states fill up first!

What are you waiting for? Plan your awareness event today!

New! Turner Syndrome Patient Handbook

Patient Handbook on turner syndrome

Have you ever wanted to learn more about your diagnosis of Turner Syndrome? Then this is the perfect book for you! Our new Turner Syndrome Patient Handbook includes all the resources you need to understand TS and the health factors associated with it. Our handbook will empower you to organize your health records along with gaining knowledge of Turner Syndrome!

This handbook is the perfect gift for this holiday season! You can keep track of your health records and learn more about TS in the upcoming year. This handbook will help you look back on your TS journey and understand your health. This will be a great gift for anyone diagnosed with TS and their caregivers. More importantly, every doctor has a shared resource to learn about the patient’s health.

If you or a loved one has Turner Syndrome or is unaware of what TS is then this is the perfect book for you. Below is a link to our new Turner Syndrome Patient Handbook, a great gift this holiday season!

Giving back to our health care providers!

Turner Syndrome Specialist

November is the month of being thankful, and with that we would like to thank the health care providers who go above and beyond each day for girls and women affected by Turner Syndrome. 1 in 2000 girls are affected by Turner Syndrome each year. This genetic condition has affected the lives of so many females at every stage of life; some diagnosed and some undiagnosed. Each day TS girls wake up, they are grateful to have the support and help of those who provide health care for them.

We would like to dedicate this month to all those who work in health care. No matter if they are a surgeon, pediatrician, occupational therapist, physical therapist, dentist, doctor etc. Each of these providers empower TS women and girls to live a healthy life in order to accomplish their goals. So this November, we thank all those who provide health care for our children and families.

If your life has been changed for the better because of a health care provider, please tell us about them at this link. This will allow us to thank them, and share their information as a resource for other TS girls and women. Thank you for joining us in being thankful!

Follow the TSF Facebook page for your state!

If you didn’t already know, TSF has a page for all 50 states! These pages exist so that people in every state can connect and follow local updates. If you are looking to meet other people with TS or find resources this is a great place to start. On the Facebook page you can also find out about ways to support our mission!

All of the pages are public so that anyone can be involved in the conversation. Each page has a moderator who will post updates from TSF and serve as the point of contact for that state. Additionally, if you have any questions about TS, send the page the message and the moderator will send you a response.

Another great part of the state pages is the opportunity to share your story. We love to hear what is happening with TS women and girls! Feel free to share updates through the page’s messages. This could be celebrations, good news, or requests for support, for example. The moderator may ask to share your update on the page so others can celebrate with you and support you.

Follow the main TSF Facebook page first to ensure you keep up with our news and updates. You can find the Facebook page for your state by typing in the search bar “TSF (your state)”, such as “TSF New Jersey.” Be sure to send a message saying hello to the moderator, she will be happy to hear from you!

Charitable giving is easy for New Jersey state employees!

New Jersey state employees can support us throughout the year in a simple way. Thanks to the New Jersey Employees Charitable Campaign, charitable giving can become a regular part of life! By setting up payroll deductions, a donation every paycheck can go a very long way in helping us to achieve our goals.

Donations received help to support our mission of helping women and girls with Turner syndrome. For example, we have a focus on facilitating educational programs about TS and investing in research that is needed in order to enhance health care. Every employee who donates, even $5 per paycheck, is standing with TS women and girls.

We appreciate the state of New Jersey for implementing this program that empowers its employees to give back. Because of our donors we are able to make progress towards better outcomes for TS women and girls.

Visit our website to find more information, and visit the NJECC to sign up using TSF’s code- 8159. Thank you!

Support the Annual Appeal

annual appeal tsf

At the end of each year, Turner Syndrome Foundation holds an annual appeal, a fundraising initiative to generate support for the coming year. Thanks to everyone who gave to last year’s annual appeal, TSF was able to:

  • Partner with clinical and university researchers
  • Launch the Star Sisters educational webinar series
  • Host the Autumn Retreat for the second year in a row
  • Continue developing the Council on Cardiology
  • Introduce the Tina Talk Turner’s children’s book
  • Offer personalized support to women and caregivers
  • And more!

There are exciting plans for 2020, and with your donation, we can continue our life changing work to support promising research opportunities and raise great awareness for Turner Syndrome together!

Give today to support Turner Syndrome Foundation’s 2019 Annual Appeal.

If you prefer to give offline, mail your check payable to Turner Syndrome Foundation, to PO Box 726, Holmdel, NJ 07733 or by call for assistance at (732) 847-3385. All gifts are tax-deductible.

Multiply the impact of your gift by becoming a monthly donor! Monthly donations make it possible for our mission to continue all year long. By spreading your donation throughout the year, you can make your gift easily fit your budget. All you have to do is select “Make this donation recurring” when you checkout!

We thank you for your continued support for this mission!

X