Advocacy is the path to obtaining the support and services you need. As an advocacy organization, we understand that gaps exist in certain areas of Turner Syndrome care, legislation, and more. However, with your help, we can raise awareness to make Turner Syndrome a national priority.
All you have to do is complete a brief form and we’ll send it to the legislators representing your constituency. Sign today and make your voice heard. Signed in the past? Be sure to sign again in 2019 to reach newly sworn in legislators!
Awareness Month is an opportunity for our community to come together, to raise our voices, and make sure everyone affected by Turner Syndrome is receiving the care they deserve. By making more people aware of Turner Syndrome, there is hope to reduce diagnosis age, to educate doctors and teachers, to eliminate any stigma associated with Turner Syndrome, and so much more. Most people do not understand Turner Syndrome until they are personally affected, but together we can start a conversation and change the future of Turner Syndrome care. Your local legislators hold the power in your community to make that happen.
There are an estimated 80,000 women and girls living with Turner Syndrome in the U.S., 2 million worldwide. This number does not include parents, siblings, caregivers, and more who are also touched by this condition. Ultimately, there are more than 2 million reasons to sign the petition.
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Every eight hours a baby is born with Turner Syndrome and their lives are a miracle. Only 1-3% of Turner Syndrome babies survive until full-term. Those that do make it will require specialized medical care at every walk of life. The sooner a diagnosis is received, the sooner care can begin. Unfortunately for many, a diagnosis is delivered too late for vital medical interventions.
Turner Syndrome affects an estimated 1 in 2000 girls. Yet, to say they are the only ones affected would be forgetting the parents who lost their baby girl in utero, the caregivers who fight tirelessly for the best treatment options, the medical providers who struggle to improve research, and the activists who dedicate long hours to this cause. Over 80,000 girls and women in the U.S. today are living with Turner Syndrome, and an even greater number are affected.
These countless individuals rely on Turner Syndrome Foundation to be their voice and advocate. However, we cannot do it alone. Alone we are a river, but together our voices can be an ocean. We need YOU to join us in raising awareness everyday and especially in February.
There are many ways to support Awareness Month. With the drive to take action and the tenacity to reach higher, together we can make a substantial difference. The future of every Turner Syndrome girl and woman is in our hands.
Doctors know the importance of preventative medicine for overall health and wellness. When it comes to Turner Syndrome, early diagnosis and preventative treatments are especially important. With a late diagnosis, treatment options like growth hormone therapy are unavailable. You can help increase awareness this February by choosing to take action! We have some ideas to help you get started:
No matter how you get involved, choose to make a difference this Awareness Month! Help your colleagues understand the importance of early diagnosis and show your patients how much this cause means to you! Learn more about the Professional Initiatives at TSF.
Catrina was diagnosed with Turner Syndrome at 20 after a chance encounter with a cashier at her college bookstore. The cashier asked her if she had Turner Syndrome. Catrina’s mother explained, “They looked at her when she was little, but they said she didn’t have it. When she was older and had her period, they were doubly convinced.”
The cashier asked because her own daughter had TS. “You have the same stature and build as her. You have a lot of the physicality of a girl with Turner Syndrome, like a low hair line, shorter fingers. Did you have any ear problems when you were little?” Catrina was floored. She had 15 ear surgeries over her life.
Catrina would later be diagnosed by a blood test called a karyotype, in which chromosomes are examined under a microscope to find the exact location of an abnormality. It took her and her mom six to seven months before her doctor ordered the blood test. The results showed that she had full Turner Syndrome and no second X chromosome.
Learning that she had Turner Syndrome was a relief because she knew now where all of her medical problems and insecurities came from. If it hadn’t been for that meeting with the cashier, she still wouldn’t know she had it today.
Catrina explained in detail how this late diagnosis impacted her. “I would advise doctors to know that Turner Syndrome comes in many forms. Doctors did not know that a woman with Turners could have some symptoms and not others. They believed that all girls with the condition were exactly the same. It took six months for me to even convince my doctor to let me get the karyotype. The biggest thing for doctors to remember is that Turner Syndrome and other genetic disorders are not all or nothing. To have Turner Syndrome does not necessarily mean that you won’t have periods; it just means it’s more likely that you won’t. Doctors need to understand symptoms or diagnoses will fall through the cracks.”
Why does she feel early diagnosis of this condition is so important? “Early diagnosis is so important because it can save and improve lives. It can help doctors and patients better prepare for medical situations and can prevent some from arising. For Turner Syndrome specifically, it can help to understand things such as skeletal, ear, and heart defects. Knowing about issues can help to start preventative medicine early on when still treatable. Girls can start growth hormones to grow taller, but only if they are diagnosed as children.”
Increased awareness can lead to an early diagnosis, made possible when we all take action for Turner Syndrome Awareness Month. Why is Awareness Month so important? Catrina explains, “It’s so important because many people, including health care professionals, do not know about Turner Syndrome. Creating awareness will help to increase knowledge about this condition and therefore, more help for those affected by it. Early diagnosis can lead to prevention of other medical issues and catching medical issues when they are treatable. Also, Awareness Month can bring together those affected by Turner Syndrome to meet one another and share their stories. This helps boost morale for those who truly need it.”
Thinking of all the ways you can get involved this Awareness Month can be overwhelming! “Do I want to host an event? Should I schedule a meeting with my legislators?” No need to worry – we’ve got an easy solution for you!
Hosting a Casual or Jean Day Fundraiser is a simple way to raise awareness while supporting TSF. What is Casual Day? Your workplace will wear jeans or casual wear for one day during the month of February to show their support of TS awareness! With guidelines as simple as “wear your favorite jeans,” everyone can participate!
It’s that simple! Are you ready to start FUNdraising?! Here are some ideas of how to make an even greater impact!
Raise awareness while you shop when you support your fellow volunteers’ Awareness Month fundraisers! Pampered Chef, Swarovski Jewelry, custom cards, and more!
February 1 officially marks the start of Turner Syndrome Awareness Month! While it’s important to raise awareness for Turner Syndrome all year long, February is a chance to do a little more!
Everyone wants to raise awareness for a different reason because each Turner Syndrome story is so unique. Caregivers searching for ways to share a diagnosis are probably here for different reasons than a woman looking for adult resources. Or maybe you want to support someone affected by TS in your life. No matter what brought you here, it’s safe to say that we all want to raise awareness and make an impact for the future of Turner Syndrome care.
Awareness Month is so important because it is an opportunity for our community to come together. One person can make a tremendous impact, but together we can bring awareness to Turner Syndrome on a national scale!
This Awareness Month, we’re celebrating the power of one! If one person takes one action, the impact can be incredible! February is a special opportunity to show the world why Turner girls are amazing and why it’s important to recognize the signs of this condition that’s often misdiagnosed. Will you take a stand with us?
We have a toolkit for you sharing four easy ways you can take action! For most of them, you don’t even need to leave your living room! Like posting on social media or signing the online awareness petition. The toolkit also features resources to help you make a difference, from talking points to flyers and more!
Register now to receive the Awareness Month toolkit. One lucky winner who completes all 4 goals in the toolkit will receive free entrance to the Autumn Retreat! Goal #1 (Be the image of TS awareness with a personalized poster) will be completed for you once you register, so check your inbox!
“I am selling my homemade cards on the Cards for Charity Facebook page with all money from the sales being donated to the Turner Syndrome Foundation from now through March. Some of the lovely designers have sent me their cards to sell as well for the benefit of the Turner Syndrome Foundation.” – Lori, TS Mother
All homemade cards are blank on the inside and come with an envelope and are $6 each but if you buy 3 cards at a time they are then $5 each (or 3 cards for $15) Local pick-up in the Toms River area or free shipping. Payment is by paypal and the cards will be mailed out after the paypal payment is made.
Go to the Cards For Charity facebook page here: https://www.facebook.com/handmadecardsforcharity/ to view the cards. If you see a card or cards that you like either post sold under the picture of the cards you would like to purchase or send me a private message on facebook with the description of your card. I will need your e-mail address to send you the invoice for the cards. So I will be in touch with you after I see the sold message on the card or the private message that you send me through facebook.
You may also be interested in Lori’s Blog Hop.
What’s a Blog Hop? It’s a great way to get lots of stamping, die cutting and card making inspiration! You just click on all the Design Team links on the blog (My Turner Syndrome Journey Blog) here: https://myturnersyndromejourney.blogspot.com/ and go to the “It’s A Girl Thing” Turner Syndrome Awareness Inaugural Blog Hop (You will find the list at the end of this page) and move from one blog after another to read the entries, see awesome projects and leave comments about what you like about each project for a chance to win prizes.
February is Turner Syndrome Awareness Month. You can do something too, and be part of this awareness initiative.
Question? Contact firstname.lastname@example.org | 732-847-3385