Turner Syndrome Foundation
We often talk about the importance of “making a difference.” This can sound intimidating, especially for young people, but the Turner Syndrome Foundation (TSF) provides many ways for advocates of all ages to make a difference for Turner Syndrome (TS). During February’s TS Awareness Month, we hope you saw some ways you can make a profound impact on the TS community as a student of any age. Let’s look at some ideas below.
“I wish to do something great and wonderful, but I must start by doing the little things like they were great and wonderful.” – Albert Einstein
Students CAN Make a Difference - Canon’s Story
My TS Diagnosis & Journey
My name is Canon, and I am a high school student from Southern California. I was diagnosed with TS at birth and am currently a junior in high school. At school, I participate in many organizations, such as the National Honor Society, California Scholarship Federation, Student Senate (the principal’s advisory board), the varsity tennis team, and as an officer in several school clubs. I am dedicated to my work as a student leader and enjoy connecting with others. I only fully learned of the details of my TS diagnosis a few years ago, so I am very excited to spread the word and bring awareness to TS.
When I was a newborn, my parents met with a genetic counselor, who advised them to treat me like a typical kid. They said it wasn’t necessary to share my TS diagnosis beyond my doctors’ visits. Through my many endocrinology and cardiology appointments over the years, I knew that TS was my diagnosis. But I didn’t fully know what that fully entailed. When I was in junior high school, my parents explained to me why I saw so many doctors and why I was so short in stature. I had always assumed that my heart condition was at the core of my medical history. I learned that TS is a rare genetic disorder in which a baby born female is partially or completely missing one X chromosome. It was intriguing, and I was glad to understand my TS history more completely. I knew that TS made me different and special, but then I finally understood what TS was.
Turner's Generation
In 2021, I started an online community and website called Turner’s Generation, for TS patients and their families to connect and learn from each other’s experiences. So far, members of this community have given thanks to their doctors and nurses, shared what they have learned from their experiences with TS, and talked about their TS challenges. I hope that this will help raise awareness for TS and bring a voice to the cause from a teen’s point of view. Now, I am thrilled to be a TSF volunteer blog writer and Awareness Group member, bringing you this article!
TS Awareness Month
TS is a rare condition affecting only 1 in every 2,000 female births, in which only 1-2% of affected fetuses survive to birth. So it is especially important to raise awareness. Every February is TS Awareness Month, when there are several different opportunities
to raise awareness and connect the TS community through advocacy.
During the month of February–and continuing throughout the year–advocates call on students, educators, researchers, and volunteers to work together to make a difference in the TS community. Last month, TSF sponsored awareness campaigns, activities, fundraisers, and informational presentations; it was a very exciting and successful month! For example, TSF held a 28-day challenge full of activities meant to help raise awareness. There were even prizes! Read more about the challenge at this link.
This year, TSF’s theme for awareness is “Raise a Voice for TS.” Let’s talk about how you can make a difference and raise a voice for TS as a student!
How Students of All Ages Can Make a Difference
Elementary School
Though it might seem scary at first, there are several ways you can help make a difference for TS awareness as a student, even if you’re still in elementary school. Here are a few things you can do to help the TS community:
- Educate yourself and others about TS: One of the simplest and best ways to raise awareness and make a difference is to learn more about TS and educate your family and friends about it. You can learn a lot about TS on the TSF website. One of the best resources is Tina Talks Turner’s, which is a book you can find in the TSF online shop. As you become more educated yourself, you might want to do a presentation about TS for your class or after-school sports team. This is a big step in making a difference!
- Write letters: Writing letters about TS to government officials, your local mayor, newspapers, or news stations is another very effective and easy way to make an impact. News publications and broadcasting networks can publish information about TS to help people learn about it. Government officials can move to create laws that would provide more resources for people with TS, making a huge difference in their lives! Ask a parent or teacher for help.
- Download TSF’s Awareness Toolkit: TSF provides a digital booklet full of helpful information for spreading awareness. In the Awareness Toolkit are graphics that you can post on any social media accounts you or your family may have, the stories of several inspiring people with TS, and interesting
questions and answers about TS and how to get involved in
making a difference. Once you download your Awareness
Toolkit, you’ll unlock a world of tools you can use to
spread awareness about TS or simply learn more about it
yourself.
- Share your story: Sharing your story is a great way to make an impact and advocate for TS. If you share about your successes and challenges, you will help so many people. They will be able to see that others around the world have undergone the same things they are going through and are now successful. This will give them hope and inspiration, helping to make a big difference! You can share your story right here on the TSF website. Note: You will need a parent’s permission for TSF to post the story on its blog.
Middle School
Middle school students can make a difference in all the ways elementary school students can and more. Here are some things you can do to make a difference as a middle school student:
- Start a TS awareness blog: Anybody can start a blog and write about anything their heart desires, using a free
website creator (just make sure you have a parent’s
permission). Writing about your experiences with TS or simply
about the condition can help raise awareness and make a
significant impact. Using your words and voice toward this
wonderful cause can create change in more ways than you
could imagine!
- Sport TS awareness merchandise: Simply wearing a “1 in 2,000” t-shirt with the words “Turner Syndrome” can help make a difference. You will probably find that many people will ask you what TS is, and you can use what you know to explain it and make someone else aware. You can buy all kinds of TS merchandise on the Turner Syndrome Foundation’s online shop.
- Become a Star Sister: TSF sponsors a positive, private online support group where people with TS can connect. Star Sisters meet virtually and can learn more about TS from each other, experts, and life coaches. You could make a difference by joining Star Sisters and sharing your experiences!
High School
As you become older, even more opportunities to take action become available. In addition to the ideas above, here are some more ways to make an impact in the TS community:
- Volunteer with TSF: One of the greatest ways you can make a difference for TS is to volunteer with TSF. As a volunteer, you can do lots of the things you enjoy, such as writing blog posts, creating social media posts, or organizing fun events. Fill out the volunteer application and start making a difference today!
- Sign TSF’s Awareness Petition: You can directly use your voice and communicate to our legislators the importance of providing sufficient resources and support for the TS community. Signing the petition for legislative advocacy is free and easy online! Sign the Awareness Petition today and be a part of the change!
- Start a TS awareness club at school: High school involves many clubs and organizations, and you could start one to raise awareness for TS. You could talk about new developments
in the TS community and ways to take action
during club meetings. Talk to a teacher or administrator at
your school. Then coordinate with TSF and obtain
resources to spread your message and make an impact on
the TS community.
College/University
As as young adult, you have more freedom and opportunities to connect with other like-minded individuals. In addition to the ideas above, you can make a difference for the TS community in the following ways:
- Do a research project about TS: If you are a biology or pre-med major who has a research assignment, you could choose to do research on TS. Doing any type of research on this condition could make a huge impact on the body of knowledge on TS and on the TS community as a whole. TSF has coordinated with several universities on undergraduate and graduate thesis projects; learn more here.
- Ask for donations– start an online fundraising page: Another great way you can “raise your voice for TS” is to create an online fundraiser. You can create your own fundraiser on the TSF website and share it with your family and friends to raise money. You can also create a fundraiser for TSF on Facebook. If you are not diagnosed with TS yourself, you can start a fundraiser for a friend or family member with TS. This can help bring awareness to TS while making a tangible contribution. Your friends and family members can also donate to the Turner Syndrome Foundation online.
We hope this article has helped give you an understanding of how to raise your voice for the TS community. Remember that it is possible for students of all ages to do many things to make a difference. Stay open-minded, and you’re sure to find a great way to use your own voice to advocate for this cause!
Written by Canon Pham, TSF volunteer blog writer, and edited by Susan Herman, TSF volunteer lead blog writer and editor. TSF thanks them for their contributions.
© Turner Syndrome Foundation, 2022
