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If you have not already, now is the time to subscribe to our newsletter! You won’t miss a thing when you receive this monthly update on what we’ve been up to. It will keep you up-to-date on events, research initiatives, ways to get involved, blog highlights, and more!

Make sure you subscribe today so that you’ll always be in the loop on what TSF is up to.

2019 Annual Report

In our annual report for 2019, we are celebrating 10 years of TSF! So much has happened in the past 10 years, and we are proud to see the progress that has been possible through dedication and support from the community. The report outlines our major successes of the past decade, and provides a more in-depth overview of highlights from 2019.

Be sure to view the report for the complete overview, but here are some accomplishments from this year:

“I must admit out of any other educational site on TS, the Foundation I find to be personally the best. There is always a person on the other end trying to help you in anyway they can, and it’s very much appreciatedI’d definitely recommend the Foundation if you need any form of help.” Jean M

Everything we do is only made possible through the generosity of our donors. We are very thankful for each person who invests in our mission, and for the volunteers who help to share programs and resources with others.

A Woman's Perspective on Infertility

coming out turner syndrome diagnosis

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

The Topic of Infertility

Infertility is definitely not a typical holiday topic, but it is a quiet discussion that whispers around the corners of my holidays: at family gatherings, in annual Christmas cards, on Christmas morning. Reminders are everywhere. These are the times when my path, that has not included giving birth to my own children, hurts with the pain of wondering, “what if?”

Infertility and TS

As a woman living with TS, I have known for many years giving birth to my own children would be difficult, if not impossible. When I was diagnosed at 15 I remember the endocrinologist saying, “by the time this is an issue for you, who knows what we will be able to do.” I was not comforted by that statement. In fact, that idea further separated me from what is considered normal and became a huge question that has framed decisions in my life.     

Infertility looks different for each woman and girl living with TS. Each TS diagnosis is unique and describes a different situation. Not to get too technical, but different chromosomal make-ups mean different physical expression and therefore different treatments. Hope lives in the nooks and crannies of diagnoses and/or technology. 

The Choice of Children

Having children is a choice for most. But, particularly right after my diagnosis, it felt like that choice had been taken from me. I would never get to decide baby names or feel rough elbows protrude from inside my belly. I would never get to take first day of school pictures or plan birthday parties or watch my kids pursue their passions. My definition of motherhood – of what it means to mother – has had to expand. It has grown to include the concept of aunt and stepmother, and the responsibility we have to all children. It now includes the perspective that we must care for and tend to our world. In that way, infertility has not left me out. It has asked me to see the world differently. 

Infertility During the Holidays

As I experience another holiday season, loving my traditions both old and new, I am thankful. I am thankful for the young people in my life. I am thankful for the opportunity to care and tend and love. I am thankful for the peace I have about my capacity to love. I am thankful for the ways in which I mother every day.  

As Katie mentioned, infertility is not limited to those who have Turner Syndrome, but it is one of the most common threads among those affected. It is a hurdle to overcome, yet there are so many other ways to start a family and find love in life. Our website contains information to help you understand your reproductive health and find a path to start a family.

Celebrating a Decade of TSF

decade of tsf

2019 marks ten years since TSF became a nonprofit organization! That means we’re celebrating a decade of service and dedication to our mission: The goal of the Turner Syndrome Foundation (TSF) is to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome. Early diagnosis and comprehensive treatments over the lifespan may lead to a brighter and healthier future for all young girls and women with Turner syndrome. 

Over the past decade, your support has given us the opportunity to make impactful, positive changes in the Turner Syndrome community. We’ve highlighted some of those achievements for you below!

This information and more can be found in the 2019 Annual Report. The Annual Report showcases who we are, what we’ve been up to this year, and how your support makes all of it possible.

Invest in our mission today to ensure that we can continue this life changing work for the next ten years and beyond. To help celebrate a decade of TSF, consider becoming a $10 monthly donor. Monthly donors support our mission all year long, while maintaining a budget. A small donation of just $10 a month has the impact of a $120 donation! Just select “Make this donation recurring” when checking out!

Give now and together we’ll celebrate how far we’ve come and how far we’ll go in the next ten years! Thank you for your ongoing support!

Year End Giving: Retirement/IRA’s

IRAs, 401(K), 403(B) and other retirement accounts grow tax-deferred. This means they often become quite large over the years. Retirement accounts are different from other types of investments. This is because funds withdrawn from retirement accounts can be taxable to you and, eventually, to your heirs. Therefore, you may want to consider charitable giving through your Retirement Plan or IRA.

Designating The Turner Syndrome Foundation as the beneficiary of your retirement account may be a very tax-savvy thing to do.

Retirement accounts left to The Turner Syndrome Foundation are removed from your estate for federal estate tax purposes. Plus, there is no income-tax assessed against your estate or your heirs when the funds are given to The Turner Syndrome Foundation. This way you avoid multiple taxes.

You can read more about this process here and find out about where your donations to us go here.

Please consider supporting our mission through this kind of charitable giving!

Great holiday gift for your loved ones!

This holiday season the Turner Syndrome Foundation has put together a TS patient handbook. Included in this handbook is facts about TS as well as a log to keep track of health records! Resources are provided to give you the best information available. This handbook not only provides you with health information, but also things such as ways to get involved. The holidays are right around the corner so this would be the perfect gift!

This holiday get to know yourself and your health better! No matter where you or your loved one is in their TS journey, this is the perfect resource to simplify your health records. Included is a log for you to keep track of your appointments, health care providers, medication details, hospitalization dates, etc. This would make a great gift for anyone who is interested in keeping their health on track, just in time for setting New Year’s Resolutions!

If you or a loved one has Turner Syndrome, check them off the holiday shopping list with this great gift. Find out all you need to know about TS in the link below!

Sell on eBay and Support TSF

eBay for charity logo

eBay makes it easy to support TSF through charitable giving!

Selling used items on eBay has always been a go-to for people trying to clean out clutter. Now, it can also be your go-to when you’re looking to make donations to support women and girls who have Turner Syndrome!

When you choose TSF as the charity you’d like to support on eBay, you can select a certain percentage of the proceeds to be automatically donated to us. There is even the added perk of having a portion of your seller fees refunded once the sale is complete. Each donation is also tax-deductible, so the benefits really make it worthwhile! By selling on eBay to support us, you may gain the peace of mind of knowing that you have helped a good cause, and that you have cleaned out some clutter while putting extra cash in your pocket. It’s a win-win!

Every listing will have a charity ribbon so that buyers know that their purchase will support a good cause. This might even help you move your items faster! Visit TSF’s eBay for Charity page to get started by clicking the button below. Every donation counts, and they are much appreciated!

Why We Support TSF

If you’re still deciding which organization you plan to support this giving season, let our community show you why Turner Syndrome Foundation is the right choice!

turner syndrome women connection

When my daughter, Julie, was born with Turner Syndrome we had never heard of it before. We found that most of the doctors we took Julie to see had never seen a Turner Syndrome patient before and so they could not answer a lot of our questions. That is where the Turner Syndrome Foundation has come into being a major asset to our family in answering medical, behavioral, intellectual and social questions. Without this organization families would be left in the dark and not understand that certain medical issues and behavioral issue are due to the missing X chromosome. For my family it was good to learn that we were not alone in our search for answers, and that TSF was able to tell us the connection to the missing X chromosome and to provide names of doctors who could help us find answers. TSF is a vital tool in helping us to understand and navigate through the TS issues.

-Lori, mom, Board Member, and fundraiser

A couple years ago I was looking to get more involved with the TS community, and I couldn’t be happier or more grateful that I came across the Turner Syndrome Foundation. From the start I have felt apart of such a loving, caring community, I am in awe of all the hard work everyone involved with the Foundation contributes in terms of advocacy, raising awareness, research initiatives, and making sure that every girl and woman affected by TS has the best quality of life possible. 

-Sarah, volunteer

My name is Kathryn and I am the mother of a 23 year-old young lady named Brooke. Living in Maine and having a daughter diagnosed with TS has had its share of obstacles. Being a pretty rural state, we struggled to find any support anywhere. As parents, we tried reaching out to other TS programs; however, we were really aiming to find one close to home. The closest organization was located in New Jersey. I reached out to Laura (founder and president of TSF) who immediately (along with her staff) welcomed our family with open arms! Since 2011 or so, we have been building our relationship with the TSF! They have helped us gain awareness in Maine where we now have February recognized as Turner syndrome Awareness Month and now, my daughter Brooke and I are co-hosting a podcast called “Butterfly Pod-Talking Turner Syndrome” where we are sharing stories of so many beautiful TS ladies both in Maine and now, stretching into New Hampshire! The TSF has been a HUGE support! We are beyond grateful to call them “Family”!

-Kathryn, mom, volunteer, and donor

I became involved with Turner Syndrome Foundation when I was involved with many young ladies in a pediatric endocrinology clinic. I was so impressed, as a nurse, that TSF offers education, at no charge, for patients, parents, educators, and health care providers. There is so much information available on the web site to support the families of these ladies, young or aging.

-Rosemary, Board Member and donor

I must admit out of any other educational sights on TS, the Foundation I find it personally the best. There’s always a person on the other end trying to help you in anyway they can, and it’s very much appreciated. I’d definitely recommend the Foundation if you need any form of help. 

-Jean, supporter

These stories represent just a handful of the thousands of families we serve everyday through our programs, resources, and events. With your support, we can continue raising awareness, educating families, and building community. Donate to TSF now to help more families like these receive the support they need.

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 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!

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.