Tools for Going Back to School

Back to School

The start of Fall is about more then heading back to school. It means getting back to our usual routines. For girls and women with Turner Syndrome, it can be especially important to establish routines, and doing so can help ease some of the difficulties that are typically associated with TS. These include nonverbal learning disability (NLD), anxiety, depression, and issues with social skills. Luckily, there are steps you can take to make this a great school year or season!

School-Aged Girls

For girls, establishing a routine will help develop effective long-term habits in the classroom. These include:

  • Creating a study schedule to follow
  • Organizing classwork with a binder for each subject
  • Prioritizing with a to-do list that includes schoolwork as well as chores, activities, and more
  • Set up a dedicated workspace that will eliminate any distractions
  • Consider a homework partner who can help with organizing assignments, task division, and time management
Heading Off to College

Congratulations! You should be so proud! At this point, students have probably formed some great study habits, but we have some tips for a smooth transition into this next exciting chapter!

  • Plan ahead and seek guidance so you have a clear sense of what to expect in this new life stage
  • Speak to the school and your professors about services you may need, such as extended time on tests and the use of a word processor for writing assignments
  • Having an emergency contact card can offer peace of mind in a new, independent setting. An emergency contact card can speak for you in the event that medical care becomes necessary.
  • A college setting offers many opportunities for social interaction. Read our page on social skills to help develop productive communications.
Tools for Teachers

The TSF website is full of resources for educators, social workers, administrators, school nurses, and more! Explore our education pages and register with TSF to receive tools and updates to help you advocate for your students.

Have tips that helped you and want to share with the community? Leave them in the comments below!

Research Opportunities

Turner Syndrome Research eXchange

Research is a team effort. The more people that are on the team, the more effective research can be. It is important for all women, girls, and family members affected by Turner Syndrome to contribute to clinical trials in order to provide researchers with a clear picture of the cause, impact, and treatments of TS.

Below we’re sharing two research opportunities that are directly connected to the larger medical community. There’s power in numbers. Increase visibility and research interest of Turner Syndrome when you choose to contribute today.


TSRX

The Turner Syndrome Research eXchange (TSRX) is a patient-centered research registry, or Patient Insights Network (PIN). A PIN is an online platform where individuals can take surveys, upload medical records, track health outcomes, and learn about the latest research. A PIN is different from a traditional research registry because participates own 100% of their data. You choose whether you’d like to share your data with the medical community or not. In addition, all identifying information is removed from the data to protect your identity.

Why Are the Benefits of Joining?

When you contribute to the TSRX, you are contributing to the global Turner Syndrome community. With your permission, your de-identified data is shared with researchers and medical investigators. The more researchers know about TS, the sooner they will be able to find answers. Help researchers help you.

Turner Syndrome Research eXchange PIN

Your information can also be shared with pharmaceutical and biomedical companies. When these companies understand TS and how many people are affected, they are more likely to invest in corresponding research studies. Overall, the TSRX can generate research interest to influence the future of TS care and treatment options. Make sure your experience is a part of the story.

The TSRX offers immediate benefits to you, too! After taking a survey, you can see how your responses compare to the de-identified data of other participants. You’ll be able to see how others with TS are managing their health in real-time. You can also opt in to receive information about research opportunities and clinical trials that match your responses.

How Do I Join?

All patients are caregivers are encouraged to join the TSRX and make their medical information count! Visit www.TSRX.us and register today!


NIGMS Human Genetic Cell Repository

The National Institute of General Medical Sciences Human Genetic Cell Repository was established in 1972 by Coriell Institute for Medical Research. The Repository contains more than 11,700 cell lines and represents a variety of disease states and chromosomal abnormalities.

A cell repository stores cell lines for use in research. To make a cell line, human cells are taken from a blood or tissue sample and placed in a container with a growth solution in a process called cell culturing. Cultured cells can then be harvested, frozen, and stored. Scientists can access banked cells and use them for a variety of purposes, including: finding new genes, studying how cells function, and developing new ways to diagnose, treat and possibly prevent genetic diseases. 

Why Should You Contribute?

The lack of availability of human cell and tissue resources for scientists is a major barrier in finding treatments for genetic diseases. When you donate a sample, you make it possible for scientists across the globe to learn more about genetic diseases. Testing candidate drugs or therapies using donated cells can help scientists determine which approaches are most likely to work and be safe enough to test further in human clinical trials.

Like the TSRX, your privacy is taken seriously. Identifying information is removed from samples and replaced with a code number. At any time, you can ask that your samples be withdrawn.

How Do I Join?

To donate either a blood or biopsy (skin tissue) sample to the NIGMS Repository, you or your child must have an inherited genetic disease or chromosomal abnormality. Contact Tara Schmidlen, MS, CGC at 856-757-4822 or tschmidl@coriell.org to inquire about eligibility and state that you would like a collection kit sent to you. Read more about the Repository.

Pfizer Sponsors Turner Syndrome Camp Weekend

Thank you, Pfizer, Autumn Retreat Sponsor!

Turner Syndrome Foundation is pleased to announce that Pfizer is a sponsor of the Turner Syndrome Autumn Retreat for the second year in a row! The Autumn Retreat will be held on September 20-22, 2019 at YMCA Camp Ockanickon in Medford, NJ. This event is exclusive to women, girls, and families affected by Turner Syndrome. The Autumn Retreat is poised to foster an environment in which new relationships can develop and thrive while providing educational opportunities to promote a broader and deeper understanding of Turner Syndrome. The agenda includes group activities, professional presentations, and a team 5K Lake Walk.

The generous support of Pfizer will ensure the success of this life-changing experience for Turner Syndrome women and girls. “We are thrilled to have Pfizer’s support for this event! With focus areas like growth hormone deficiency, cardiovascular health, and women’s health, it’s easy to see why Pfizer is a good fit for our mission,” said Program Development Coordinator of Turner Syndrome Foundation, Alexis Gratton. “We are also happy to partner with Pfizer due to their commitment to improving patient care through quality healthcare and education – much like TSF.”

About Turner Syndrome Foundation

The goal of the Turner Syndrome Foundation is to support research initiatives and facilitate education programs that increase 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. Turner Syndrome Foundation collaborates with patients, physicians, educators, legislators, and researchers to fulfill our mission through our four program areas of awareness, advocacy, education, and research. TSF serves more than 20,000 individuals through our patient and professional education workshops, national awareness athletic events, research registry, and open-access education resources. To learn more, visit www.TurnerSyndromeFoundation.org

About Pfizer

Headquartered in New York City, Pfizer has more than 150 years of experience developing products to improve and extend lives. Pfizer’s portfolio includes medicines, vaccines, and some of the leading consumer healthcare products. As a leader in biopharmaceuticals, Pfizer is also dedicated to giving back. To learn more, visit www.pfizer.com

Interested in joining Pfizer as a sponsor of this incredible weekend? Contact Alexis Gratton at agratton@tsfusa.org

Join Samantha at the Autumn Retreat

Samantha will be joining us at this year’s Autumn Retreat! We asked Samantha to share a little bit of what this opportunity means to her:

“I was diagnosed with TS at age 8. I never had any support system and was never around others with TS until recently. I am now 30. It has made for some trialing times, but I have overcome those trialing times and am now so ecstatic to be a part of such an amazing organization. I have made some amazing TS friends, and hope to continue with new adventures and continue to make new relationships with other women with Turners. These events truly inspire me, they help me realize and know I am not alone in this fight. That is exactly what TS is everyday, a fight. In this fight though we have each other, and together we are always Turner strong. This helps me make it each day in this life.”

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The Autumn Retreat was designed with you in mind. As Samantha says, you are not alone and we created this event to help you feel supported. At the Autumn Retreat, you’ll connect with other women and girls who understand your Turner journey because they’ve been through it, too. From icebreakers to help everyone get to know each other, to group games and activities that encourage everyone to work together, you are sure to leave this weekend with a new friend.

One of our favorite moments from last year’s Retreat was the rock-climbing wall. This activity pushed our group outside of their comfort zone – even helping some to face their fear of heights! We were so proud of those who decided to give it a try, and even more proud of the community and support on the ground. Our group cheered on each individual brave enough to take on the rock wall – helping them reach a little higher! The energy, smiles, and support of this activity represent what you can expect to experience when you attend this year’s Autumn Retreat! Register now – spots are filling fast! 


REGISTER NOW

Novo Nordisk Sponsors Turner Syndrome Foundation Weekend

Thank you, Novo Nordisk, Autumn Retreat Sponsor!

Turner Syndrome Foundation is pleased to announce that Novo Nordisk, Inc. is an Education Sponsor of the Turner Syndrome Autumn Retreat for the second year in a row! The Autumn Retreat will be held on September 20-22, 2019 at YMCA of the Pines in Medford, NJ. This event is exclusive to women, girls, and families affected by Turner Syndrome. The Autumn Retreat is poised to foster an environment in which new relationships can develop and thrive while providing educational opportunities to promote a broader and deeper understanding of Turner Syndrome. The agenda includes group activities, professional presentations, and a team 5K Lake Walk.

The generous support of Novo Nordisk will allow girls and women to benefit from this life-changing experience that otherwise may not have been able to attend. “We are thrilled to have their support for this inaugural weekend retreat! Novo Nordisk is a natural fit for our mission because of their commitment to defeat diabetes. This risk of developing diabetes is ten-fold in women with Turner Syndrome compared to the general public, and diabetes prevention is one of the main programs of the Retreat. They are also leaders in growth hormone therapy,” said Program Development Coordinator of Turner Syndrome Foundation and contact for the Retreat, Alexis Gratton.

About Turner Syndrome Foundation

The goal of the Turner Syndrome Foundation is to support research initiatives and facilitate education programs that increase 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. Turner Syndrome Foundation collaborates with patients, physicians, educators, legislators, and researchers to fulfill our mission through our four program areas of awareness, advocacy, education, and research. TSF serves more than 20,000 individuals through our patient and professional education workshops, national awareness athletic events, research registry, and open-access education resources. To learn more, visit www.TurnerSyndromeFoundation.org

About Novo Nordisk

Headquartered in Denmark, Novo Nordisk has more than 90 years experience as leaders in diabetes care. Novo Nordisk is also a leader in hemophilia care, growth hormone therapy, hormone replacement therapy, and obesity. To learn more, visit http://www.novonordisk-us.com/

Interested in joining Novo Nordisk as a sponsor of this incredible weekend? Contact Alexis Gratton at agratton@tsfusa.org

Share a Photo, Support Research

Genetics Home Reference is partnering with Genetic Alliance to give a face to Turner Syndrome. You can help the world understand Turner Syndrome by sharing your photos! Genetics Home Reference is gathering images and photographs to add to their website to supplement existing educational text about genetic conditions, genes, and chromosomes. The goal is to give a face to the wide variety of recognized genetic and rare diseases.

What is Genetics Home Reference? Genetics Home Reference is a free online resource from the National Library of Medicine, part of the U.S. Department of Health and Human Service. It is designed for those who wish to learn more about human genetics. 

Do you have a photo you believe would be helpful in explaining TS? Please send it along! Visit https://ghr.nlm.nih.gov/about/image-submission to read the submission guidelines and learn how photos will be used. When you’re ready to submit, complete the Image Consent form below!

This is a project of Genetics Home Reference. Turner Syndrome Foundation is not responsible for use of submitted materials.

Support TSF at Work

turner syndrome foundation employee volunteer

When it comes to volunteerism and philanthropy, your first thought might not be your employer, but you might want to think again. With a number of programs designed to give back to the local community, corporations have the resources to benefit the causes that are important to you. Support Turner Syndrome awareness as an employee volunteer!


Employee Volunteer Programs

An employee or workplace volunteer program is a chance to give back while encouraging your employer to do the same. Each company’s program is a little different, but most will donate to the charity of your choice for each hour you spend volunteering, including retirees. For example, your employer may offer a $100 donation for every 10 hours you volunteer with a nonprofit organization. Some companies will even provide a paid day off, so you can use that time to volunteer. There are many projects you can complete as a volunteer for TSF:

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  • Provide office support in your area of expertise
  • Table at a local health fair
  • Host a talk with a PowerPoint presentation provided by TSF
  • Share flyers around your office to raise awareness
  • Meet with legislators
  • And more!

A recent Turner Syndrome Foundation employee volunteer shares her experience:
“My company offers a volunteer day, so that the company employees can support the communities in which they live. When I was searching the company’s volunteer database for an opportunity, I found the Turner Syndrome Foundation. This was a disease that I have never heard of and wanted to know more about since it only affects women. After reaching out, I was contacted by TSF and given information on TS and how the Foundation helps women. After hearing about TSF, I felt like this was an opportunity to put my office skills to good use. I got to work in the main office, where I learned more information on how people can help and the resources that TSF provides. It was an enlightening and educational experience that I truly enjoyed. This experience was very worthwhile.”

Workplace Giving

Many companies will take tips from their employees when choosing which charities to support. They want to give to the causes that are meaningful to their employees! There are a handful ways that your employer may make a donation to TSF, and we discuss a few below. Additionally, most companies have a philanthropic department that offers support to charities, and you can nominate TSF!

Matching Gift Programs

Countless companies across America are celebrating their employees’ support of nonprofit organizations by offering a matching gift. Most programs will match your donation dollar for dollar, allowing you to double or even triple the value of your donation! Matching your gift is basically a no-cost donation for you!

Payroll Deductions

You can have your company deduct a small amount of your paycheck each pay period for a year. This is the perfect way to make a large donation and pay for it in small, easy to digest installments. Payroll deductions also make it easy for you to track your charitable contributions when you need it for tax purposes.


Speak to your Human Resources department to find out which programs are available in your workplace, then complete the TSF Volunteer Application. Know of a business that will support TSF? Let us know!

TS Care Center: eXemplarY Kids Clinic

exemplary kids clinic, cedars sinai

The eXemplarY Kids Clinic of Cedars-Sinai in Los Angeles, CA is a multidisciplinary clinic for children with X & Y chromosome variations. We spoke with Dr. Schweiger, Director of Pediatric Endocrinology and Co-Director of the Clinic, to learn how this center cares for girls with Turner Syndrome.

What kind of specialized care can Turner Syndrome girls expect to receive at the Clinic?

The girls with Turner Syndrome would meet with a pediatric endocrinologist, a dietician and a social worker about every 4-6 months. Depending on their needs we could also consider if referral to another specialist, such as a neurodevelopmental evaluation, cardiology or nephrology is needed.

The Clinic focuses on a multidisciplinary approach to care. Can you share why this is important?

Multidisciplinary teams have been found to have many benefits to both the patients and the health care team. They have been found to use more efficient use of resources and improved health outcomes for patients. They have also been found to improve satisfactions and communication between patients and team members.

Transition to adult care is an important step for those with TS. How does Cedars-Sinai and the Clinic work with adult endocrinology to offer comprehensive transition of care?

We would closely with our Adult Endocrinology Department to help with a smooth transition. Transition tool kit is completed and information is discussed with the adult endocrinology team prior to patient transfer. We also have one of the top Adult Endocrinology Programs.

Do patients need a referral to visit the Clinic?

Depending on their insurance they might need a referral. When they call to schedule their appointment, our office staff can help direct them if a referral is needed.

Where does the Clinic meet?

The clinic meets at the Steven Spielberg Building
8723 W. Alden Building, SSB, Room 240
Los Angeles, CA 90048

To learn more about the eXemplarY Kids Clinic, please visit https://www.cedars-sinai.org/programs/pediatrics/conditions/endocrinology.html or call  (310) 423-7940.


Not from California? Find resources in your area by visiting our map and selecting your state!

Disclaimer: Turner Syndrome Foundation does not review or endorse any providers. Please do your own research before choosing a care provider.

Welcome!

turner syndrome

We’re happy you found us! It’s important that you’re here. Turner Syndrome (TS) is a genetic condition that affects every 1 in 2,000 females randomly. Early diagnosis of this lifelong condition is essential to long-term health outcomes. Whether you are directly affected by TS, a medical professional, or just passing through, it’s important that you recognize the signs to help lower diagnosis age.

Those affected may or may not exhibit these common characteristics.

All of the resources you’ll find here are completely free for you. We do not charge membership dues to anyone because we believe in making lifesaving information accessible to those who need it most. Spend some time browsing through our website to learn about every aspect of Turner Syndrome!

TSF is a 100% donation-based nonprofit organization, and we appreciate your support!
Please feel free to contact us with any questions or concerns!

Forty Niners Walk the Walk

The 2nd Annual 5K Olivia’s Challenge for 2019 is in the books! Olivia and friends were in good company with several clubs (5 in all!) massing together to raise awareness & support for Turner Syndrome.

Special thanks to all of the San Francisco 49ers Clubs for helping to make this event a great success! Sweet Olivia is one lucky girl to be surrounded by so much support and affection.

If you are moved to action as seen here, individuals and clubs can make a difference. If you would like to plan an event, contact TSF at  (800) 594-4585 or email info@tsfusa.org for further assistance. 

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