Why You Should Support Awareness Month

turner syndrome, awareness month, raise awareness

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.

Take Action for Awareness Month

Request Your Awareness Toolkit

Sign the Petition

Donate to Support Awareness Efforts

Host an Event

Learn More

How Physicians Can Support Awareness Month

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:

TSF Workshop
  1. Include your network. Encourage the medical societies you are a part of to share information about Turner Syndrome throughout February to educate your colleagues. As you know, many medical societies and networks reach out to their members on a regular basis. Including information about TS Awareness Month in the next newsletter is a surefire way to reach many professionals at once.
  2. Promote early diagnosis. During February, and all year long, display posters and brochures in your office to promote the importance of early diagnoses and lifelong care. Even if you’re not in a pediatric or endocrinology facility, you still have a voice in the medical community! Awareness items like clinical posters, banners, and more are available for purchase in the TSF online store.
  3. Host a workshop. Hosting a patient education workshop at your hospital or medical center will educate your colleagues on the topic and encourage new patients to visit your facility. From a formal afternoon with multiple speakers to a casual patient meet-up, empower your patients and their caregivers to navigate all aspects of this complicated disorder by fostering a relationship we anticipate will continue long into the future!
  4. Become a member. The TSF Professional Membership gives physicians the opportunity to showcase their practice on our website, creating a network of support between experienced providers and patients looking for specialized care. A small annual fee ensures that awareness efforts will continue beyond Awareness Month.

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.

My Story: No Diagnosis Without Awareness

turner syndrome awareness early diagnosis

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.

Receiving a Diagnosis

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.”

How Awareness Month Makes a Difference

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.”

Take Action for Awareness Month

Download the Talking Points Guide and start the conversation to educate your community about Turner Syndrome. Looking for more resources? Request your copy of the Awareness Toolkit.

Host a Casual Day Fundraiser

jean day

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!

How to Host a Casual Day Fundraiser
  1. Speak with your boss or human resources department to let them know you’d like to host this event.
  2. With their approval, select a date for your fundraiser.
  3. Complete the TSF Event Organizer Form so we can help you!
  4. Set up your online fundraising page to make collecting donations easy.
  5. Post flyers around your office and invite your colleagues to participate. Encourage a $5 donation for participation and provide a link to your online fundraiser.
  6. Enjoy your Casual Day Awareness Month celebration!

It’s that simple! Are you ready to start FUNdraising?! Here are some ideas of how to make an even greater impact!

  • Take a group photo on Casual Day! Share it with us to encourage others to host a similar event. Invite your company to share the image on their website, too (be sure to mention the great publicity they’ll receive!) to raise even more awareness!
  • As we mentioned above, participants typically donate at least $5 to be a part of Casual or Jean Day. Ask your employer to match the amount you raise to double your impact! Most companies are happy to support causes that are important to their employees.
  • Take your fundraiser a step further and invite everyone to also wear green that day to stand in solidarity with TSF! Imagine how great that group photo will look! More awareness items and apparel can be purchased in our online store.

Awareness Month Fundraisers

fundraisers

Raise awareness while you shop when you support your fellow volunteers’ Awareness Month fundraisers! Pampered Chef, Swarovski Jewelry, custom cards, and more!

February is Turner Syndrome Awareness Month

turner syndrome awareness month
Why is Awareness Month Important?

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!

Awareness Month 2019: Awareness in Action

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!

MORE WAYS TO TAKE ACTION

February Awareness

Awareness Petition

Support Awareness Efforts

2nd Annual- Move It For Millie

Previous Event: Move It For Millie 2018

Cards For Charity

“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.

Specialty Cards from France made by my Scrapy Land Design Team Friend ~ Tiphanie Falco ~ especially for the benefit of the Turner Syndrome Foundation!! Each of these cards is exquisite! Filled with beautiful elements and details!!
Specialty Cards from France made by my Scrapy Land Design Team Friend ~ Tiphanie Falco ~ especially for the benefit of the Turner Syndrome Foundation!! Each of these cards is exquisite! Filled with beautiful elements and details!!

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.

FIRST STEP… Complete “Awareness In Action Form”

Question? Contact volunteer@tsfusa.org | 732-847-3385

February Awareness

My Story: “It’s Rewarding to Help Others”

turner syndrome advocate
A Turner Syndrome Advocacy Volunteer Shares Her Story

My name is Kym and I was diagnosed with Turner Syndrome at 16 years old. I was born the youngest of six with my twin brother in 1971. Growing up I showed some signs of Turner Syndrome, but doctors never put it together. I was always the shortest in my class, had a webbed neck, and experienced hearing problems.

At 16, my mom was concerned about my growth and puberty. I had a DNA test, which finally confirmed my Turner Syndrome. It was scary at first not understanding Turner Syndrome and being a teenager. Luckily, I learned quickly not to let it stop me. Meeting others with Turner Syndrome helped me as well. I went to college got my BA and Masters in Counseling.

I am currently a retired teacher and a volunteer advocate for the Turner Syndrome Foundation in my home state of New Jersey. We were instrumental in getting a bill passed that made February Turner Syndrome Awareness Month in New Jersey. I phoned, emailed, and even testified in front of the NJ Senate. Currently, I volunteer by talking with others about Turner Syndrome for the TSF.

I want every Turner Syndrome baby to have the advantages I didn’t have due to my late diagnosis. I have a passion for awareness and hope to help girls receive a much earlier detection. It is rewarding to help others.

Like Kym, you can be the change and influence the future of Turner Syndrome care. The easiest way to get involved is by making a donation today. Your support allows TSF to continue offering support and resources to volunteers like Kym who are dedicated to making a difference.

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