Overcoming Labels: How ONE Sixth Grader Opens Up About Having Turner Syndrome

By: Rachel Belmont

It takes a strong, resilient, and driven person to overcome a label that has been associated with them their entire life. This is the case with 12-year-old Natalie Mohorter, an extremely intelligent, beautiful young sixth grader with Turner’s Syndrome. Natalie is similar to other children, in the sense that she enjoys science classes, graphic design, riding horses, playing basketball, and spending time with friends. However, what makes her unique is that she has a disease that affects 1 in 2000 girls, making her a true miracle baby. This was despite the fact that doctors told her mother during pregnancy that Natalie would have a 0% shot at life, which has been Natalie’s motivation ever since to live her life to the fullest, proving to herself and others that she is stronger than any label associated with her.

The dangerous thing about labels are the fears and misunderstandings that come along DSC_0003with them. Growing up, for example, Natalie was always teased by children who did not understand or have compassion to see past her Turner’s Syndrome, a condition that encompasses a range of health problems such as infertility, short stature, learning disabilities, and heart defects. In Natalie’s case, she was shorter than most children in her class, making her an often target for bullying. In addition, she was diagnosed with ADHD, resulting in labels that stemmed from her overly talkative-bubbly personality. In Natalie’s case, this provides an explanation for why it is easy for her to make friends, but difficult to keep them. However, there is nothing “horribly different” or “wrong” with having a condition or any other kind of disorder. Whether it is Turner Syndrome or ADHD, these conditions only make a person more unique…different, yes, but aren’t we ALL different in our own respects?

“People should aim to understand one another in the sense that nobody is born perfect, and even if you are lucky enough to be born perfectly healthy, it is unlikely that you don’t have other qualities that make you imperfect.”

This is the message Natalie tried to deliver to people while organizing her sixth grade Gateway Project, a capstone class assignment meant to spread awareness about any topic of her choice. In this project, she officially came out to her fellow classmates, teachers, and community about having Turner Syndrome. She wrote a 5-page research paper about the history of Turner Syndrome, and made a comic strip to describe dealing with her disease, while additionally organizing a poster presentation for her community in her school’s gym. As Natalie describes it, everyone was in absolute awe at how brave she was for coming out about having Turner Syndrome.

Classmates of hers who had teased her in the past were a lot nicer and showed more of an understanding towards her as well. Natalie not only successfully spread awareness about Turner Syndrome to everyone, but made it known that despite any adverse conditions against her, she would not let fear or discouragement from keeping her love and passion for life alive. Natalie is an incredibly gifted and driven young women with nothing holding her back from accomplishing anything she sets out to do.


Inspired by Natalie’s courage? Consider making a DONATION, or setting up a fundraising page. Help steer this important cause for all girls and women affected by Turner Syndrome.

Share your comments below. Like Natalie, you can change the stigma and lack of knowledge there is of Turner Syndrome in your community. Interested? Email: volunteer@tsfusa.org ASK for ways to help or call 732-847-3385

ADHD | SOCIAL CHALLENGES | GROWTH | TAKE ACTION

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Paid for your opinion: Recruitment for a usability and human factors research study into a new injecting device is underway. Patients who have growth disorders and those who are involved in treating them, are sought to gain feedback about the design.

The research will consist of either two or three sessions (60 minutes training followed by a 60 minute assessment, or 60 minutes training followed by 2x 60 minute assessments) done on consecutive days and a cash honorarium will be paid upon completion of all sessions as a thank you for your time. This is not a clinical study and no one will be asked to take any sort of medication.

If you are interested, please complete the form below.

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Question? Contact info@tsfusa.org or call 732-847-3385

 

Running: The Perfectly Painful Outlet

Everyone has an outlet. A passion, an activity, a guilty pleasure. Something that puts their mental and physical health in check. Well….mine is running. Running is more than an activity designed to keep you in excellent physical shape. It is a sport fueled by the passion of someone who wants to challenge his or herself in every mental and physical possibility imaginable. Whether it is by running a 5k, a full marathon, or longer distance, running brings out some of the best qualities in us. I often use my long training runs not thinking about how busy or stressed I am at the moment, but rather how in tune I am with my body and mind. Am I doing what I love in life? Am I happy? What goals am I working on to improve upon myself…to become the best runner, but more importantly, best version of myself possible. Running is the perfect outlet that allows for my creativity to flourish, whether it is on a night run around my neighborhood, or on the trails early in the morning.

Personally, I am a big proponent of listening to music while running. The combination of my rapidly beating heart to the sweet sound of music creates this indescribable chemistry in my brain, giving me unmeasurable doses of adrenaline and passion. Some of my best ideas have come to me on runs, resulting from the process I just described. Heck, my idea to run my first marathon came to me on a run! Running truly makes for the perfect outlet because of the individuality central to the sport. You are competing against yourself the entire time. This is central to understanding how running sets up a chain reaction of events that change and challenge you to overcome your biggest, darkest fears. To morph you into the strong and fierce warrior constantly envisioned in your mind. Every day you run, you are challenged to chase the personal image you’ve been dreaming about obtaining for ages. Do you want to get into better shape, and run your first 5k? Every time you go out for a run, you are positively challenging yourself to do just that. Training to overcome an injury and complete your first marathon? You just challenged yourself to overcome the fear of re-injury, in pursuit of accomplishing something that sets your heart on fire. Running is not only an outlet that calms the mind and challenges the body, but one that additionally challenges you to improve upon overlooked personal traits such as having patience and discipline. It is truly one of the most blissful, yet beautifully painful ways to discover how badly you want to reach a goal, whatever it may be. There is beauty in pain, especially with a goal continuously motivating you the entire way. Whatever your goal is, remember that if you can dream up a way to implement it, you can absolutely 10000% do it….and running can help you can get there.


WHAT IS YOUR OUTLET? Is it running? If so, Be a Part of Team TSF, our heel-to-pavement movement. Join any of the hundreds of races going on all over the country (and world). Not only will you get to do what you love, but you will also be making a difference in the Turner Syndrome Community. Run for Turner Syndrome!  Contact volunteer@tsfusa.org if you have any question.

Inspired? LEAVE YOUR COMMENTS BELOW!

If running is not your thing, you can still do something you are passionate about  while supporting Turner Syndrome. TAKE ACTION.

HOST AN AWARENESS EVENT.

SHARE YOUR STORY

CREATE A FUNDRAISING PAGE

ORGANIZE A BAKE SALE

WALK/RUN FOR TS.. JOIN TEAM TSF

A collaborative effort for TS Awareness

Have you met anyone affected by Turner Syndrome yet? If you have, would you like to re-live the experience? Here’s how to make it happen, while making a difference.
You can be part of an awareness event planning in your state/community.
It’s easy. Fill the form below, include your skills and interests, and based on the individual submissions from each state, we can create THE TEAM that will make it possible for you and others. One person may not be able to do everything and this is why we are facilitating this great initiative to collaboratively create something great.  No experience is needed, just the passion and willingness to make a difference! WE ARE HERE TO GUIDE YOU. 
 
Not only will you be meeting with other TS women and families, but you’ll be working together to make a difference! 
 
If you have any question, please do not hesitate contacting us. Email us at volunteer@tsfusa.org
LEAVE YOUR COMMENTS BELOW.

Are you interested in sharing your experience with Turner Syndrome?

Audrey (AJ) Jones, a first year cultural anthropology doctoral student at Emory University, is conducting an ethnographic study of girls and women with Turner Syndrome. 
ABOUT STUDY:
Unlike the typical medical studies of Turner Syndrome, this study is interested in how girls and women with Turner Syndrome living in North Carolina describe themselves, interact with their communities, and participate in awareness and advocacy efforts in light of their diagnoses, with a particular focus on the experiences of short stature, stunted puberty, and infertility.
Girls and women with Turner Syndrome of all ages and demographics are welcome to participate in this study.
This study employs the ethnographic methods of participant observation and interviews. Participant observation may occur during the daily activities of participants and at Turner Syndrome community events, where the researcher will take notes as she interacts alongside participants and their communities. Interviews will be both formal and informal, and will take place in a variety of locations agreed upon by participants and the researcher.
Length of participation is flexible depending on the desires of each participants, and may span from a single 30 to 60 minute long interviews to daily interactions over the course of ten weeks.
There are no direct benefits for participants of this study. However, this research fills an important and necessary gap in understanding the individual and community experiences of girls and women with Turner Syndrome, who have been almost exclusively researched from a de-socialized medical perspective. As a result, this study may positively impact girls and women with Turner Syndrome in the future.
If you are interested in participating in this study or learning more about the research and/or researcher, please fill out the form. Your interest at this time does not commit you to this study.

ABOUT Researcher:

10251897_10152488529644575_7737672094390822874_nAudrey (AJ) Jones is a first year doctoral student of cultural anthropology at Emory University. Her broad interests include the topics of illness and disability, medicine, gender, and the body. Her current research focuses on the communities, narrative and subjectivity formations, self-advocacy efforts, and feminist thoughts and actions of girls and women with the genetic condition Turner Syndrome. Her previous research involving interviews with women with Turner Syndrome cumulated in her undergraduate thesis, “‘I’m a friend, an aunt, an adoptive mother, a writer’: Turner Syndrome and the Contemporary American Woman,”for which she received an honorable mention from Princeton University’s anthropology department.

During the time of her undergraduate research, she also spent ten weeks writing weekly articles for the Turner Syndrome Foundation that sought to engage with new perspectives on Turner Syndrome and inspire awareness and activism. She strongly believes that academia and activism are not mutually exclusive endeavors.

Hypertension and Nutrition Workshop for Parents & Children with Turner Syndrome

Rutgers University Study on the Epidemiology of TS

Rutgers Student Studies Health Concerns in Turner Syndrome For MPH Project

Veronia Hanna, Rutgers University Masters of Public Health student, chose to study Turner Syndrome for her practicum poster presentation, a final project required for Masters of Public Health candidates. Titled, “Health Concerns in Turner Syndrome Patients,” Veronia assessed the epidemiology of health concerns frequently expressed by women and girls with Turner Syndrome. She completed this IRB-approved study by quantifying de-identified survey responses of more than 2,000 patients and caregivers.

Veronia presents her findings at the MPH Practicum Poster Session.

When preparing for this research study, Veronia noted that most of the existing literature focused on short stature and other physical implications of Turner Syndrome, but shed little light on the psychological aspects. She also noticed that the literature was not clear on the impact diagnosis age and early interventions had on the severity and number of health concerns. Through her research, Veronia sought to bring some understanding to these aspects of Turner Syndrome.

Veronia found general health and lack of awareness to be the most commonly reported health concerns among the survey responses, and that patients and parents reported their concerns differently. Overall, more research, education, and awareness are needed to fully understand this complex condition.

Are you looking to expand your research skills with a unique and impactful project? Complete the TSF Volunteer Application today and we’ll work with you to develop a meaningful opportunity! We look forward to receiving new candidates to continue Veronia’s important study this fall!

“Working with the Turner Syndrome Foundation was an incredible experience. Having the opportunity to analyze data that’s been collected over a number of years provided robust and unique insight about the concerns of TS women as well as parents of those with TS. Assessing health concerns elucidated the hardship and less acknowledged social/emotional difficulties of women living with TS. I hope this research and results opens the door for further assessment of self-reported health concerns amongst women and parents waiting for their voices to be heard to raise awareness about TS and its implications on quality of life.” 

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From One Runner to Another

From One Runner to Another: How the Turner Syndrome Foundation Builds Friendships Based on Empowerment and Inspiration

By: Rachel Belmont

Recently, I decided that I wanted to take on the daring and arduous challenge of running a marathon on all 7 continents. However, I want to complete this goal while raising money for the Turner Syndrome Foundation, so I could empower women with TS, as well as women from all backgrounds to lead healthy, active lifestyles. I find it so important to stay active…not only to maintain my health and fitness, but to fuel my passion, creativity, and personal happiness as well. One of my first donors, a grandmother of a young girl with Turner Syndrome, was inspired by this message of mine, and wanted to contribute to my cause. After speaking with my donor on the phone, I discovered that she was also a marathon runner, but a very experienced and decorated one as well. It turned out that she had run over 60 marathons, including one in every single state, while raising money for the Turner Syndrome Foundation. The two of us enthusiastically shared remarkable stories of marathons we had run, while explaining our motives for doing so.

The Turner Syndrome Foundation served as an inspiration for the both of us to run marathons, by doing so to empower women with TS to live their happiest, healthiest, most active lives. The Turner Syndrome Foundation has the ability to attract people from all backgrounds to assimilate into a community of loving, supportive people who care about one another’s health and well-being. An example of one such connection is found in the one I shared with my donor, one marathoner to another, who both used running as a motive to give back to the community. Stripping away running from the equation, the Turner Syndrome Foundation has the capability to build strong, genuine friendships between women, regardless of background. It does not matter how experienced of an athlete you are, or whether you have or know someone with Turner Syndrome.

There is room for everyone in this organization, being that each member brings an open heart and willingness to not only spread awareness of TS, but to build a strong foundation of women supporters and friends as well.


Join Team TSF TODAY. Find a race near you, or host your own event, and begin raising awareness for Turner Syndrome. We are here to guide you! Questions? Email teamtsf@tsfusa.org or call 800-594-4585

LEAVE YOUR COMMENTS BELOW. 

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Be featured in our website, social sites, or any of our other TSF platforms. All you have to do is complete the form at the link below and attach a high quality photo of yourself and/or with a TS girl. The options are endless… The day you were born, first day of school, family vacation, wedding, graduation, doing something you love.. You get the point!

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