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Team TSF Lake Walk: Everyone Welcome!

autumn retreat day trip, lake walk
We want YOU to join us for a unique Team TSF event!

Join us on Sunday, September 22 for a Team TSF 5K lake walk to support Turner Syndrome awareness! All ages and fitness levels are welcome to attend! Come as an individual or bring a team – everyone is invited to raise awareness for Turner Syndrome! Please note: Due to the nature of the course, unfortunately strollers will not be permitted.

What: Team TSF 5K Lake Walk
When: September 22, 2019 at 11am
Where: YMCA of the Pines, Medford, NJ
$35 registration fee includes team t-shirt while supplies last!
Contact agratton@tsfusa.org with any questions!

  

This event is part of the TSF Autumn Retreat weekend! Registration for the weekend includes the Lake Walk. Learn more about the Autumn Retreat.

Spend a Day at the Autumn Retreat

autumn retreat day trip, lake walk
Join us for a day trip at the Autumn Retreat!

You may have heard us talk about the Autumn Retreat, but did you know you can still join us for a day trip if you can’t make it for the full weekend?! With packed schedules and busy lives, it can be hard to get away for a weekend. But with all of the amazing benefits of the Retreat has to offer, getting away for at least one day is definitely worth it!

Whether you’re looking to speak with professionals and learn about TS or you’re interested in making social connections, we have an opportunity for you! You’ll receive a special discounted day rate when you register.

Saturday, September 21 – Join us for a day trip! If you can’t make it for the weekend, attending on Saturday is a great alternative as the bulk of the activities will occur on this day. On Saturday you’ll learn from professional presentations about managing Turner Syndrome. You’ll also have the opportunity to participate in outdoor activities while making friends and connections. Registration fee includes all meals and activities for the day. Parents of young girls with TS – this is a great option for you!

Sunday, September 22 – Spend an active afternoon with Team TSF! Join Team TSF, Retreat attendees, family, friends, and more as we complete a 5K lake walk around the beautiful Lake Stockwell followed by a lunch reception. Invite family and friends and bring a team! Registration includes Team TSF t-shirt while supplies last!

We hope you’ll decide to join us for a day trip at the Autumn Retreat! If you have any questions, 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.

Retreat for Turner Syndrome Women

turner syndrome women
What is the Autumn Retreat?

The Autumn Retreat is a camp-style weekend for Turner Syndrome women, girls, and family members. Retreat weekends offer a space for participants to focus on their health and well-being. The Autumn Retreat goes a step further. Because this weekend is exclusive to those affected by TS, you’ll meet other women with TS – a huge request from our community! You’ll create memories and connections to last a lifetime.

Why Should I Attend?

Turner Syndrome is often thought of as a pediatric condition. However, this lifelong condition requires specialized care at every stage of life. At the Turner Syndrome Foundation, we recognize the need for support and resources for women affected by Turner Syndrome. The Autumn Retreat is designed for every age group. We’ve included activities that give girls, women, and caregivers each a chance to connect and talk openly.

What Can I Expect at the Retreat?

The weekend’s agenda offers something for everyone. Wellness activities allow you to reconnect with yourself, while outdoor activities might encourage you to leave your comfort zone. Last year’s activities included professional presentations, yoga, nature walks, campfires, and more! The holistic approach to the weekend will refresh your mind, body and soul.

Event Details

The Retreat is on September 20-22, 2019 at YMCA of the Pines in Medford, NJ, conveniently located near Philadelphia and New York City. To learn more about accommodations, visit https://turnersyndromefoundation.org/turner-syndrome-retreat/

Register Now!

We encourage you to join us, get away for the weekend, and enjoy all of the relaxation and recreation the Autumn Retreat has to offer.

Autumn Retreat Scholarship

turner syndrome autumn retreat scholarship

The Autumn Retreat is a camp weekend exclusively for women and girls affected by Turner Syndrome and their families. The Retreat features educational sessions, outdoor adventures, and activities to unwind and have fun. From a campfire and s’mores to canoeing on beautiful Lake Stockwell, there’s something for everyone to enjoy!

But what makes the Retreat extra special? The chance to meet women and girls like you who understand your TS journey. The opportunity to spend quality time connecting over shared experiences. And leaving the weekend with friends you can turn to long into the future.

However, we know not everyone can attend this “life changing” weekend. To extend this opportunity to more women and girls, we are offering one lucky winner a scholarship in 2019!

Applying for the Autumn Retreat Scholarship

Contest Rules:
Complete the online application by July 21, 2019 at 11:59 PM EDT. The Autumn Retreat scholarship will be awarded to one individual who expresses the greatest need. The scholarship will be applied only to lodging at YMCA of the Pines and does not include transportation or any other superfluous expenditures. The scholarship must be applied to the 2019 Retreat. Due to the limited number of scholarships, qualifying does not guarantee placement at the Retreat. Participants under the age of 16 must be accompanied by a parent or guardian. Winners will be notified by August 2.

Judging Criteria:
One winner will be selected based on the need of the individual and the extenuating circumstances that prevent the individual from attending. Additional details that will be considered include whether or not the individual has attended TS-specific events in the past and any volunteer work.

Good luck, and thank you for your interest in attending the Autumn Retreat! Please feel free to contact Alexis Gratton with any questions at agratton@tsfusa.org.

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:

turner syndrome foundation employee volunteer
  • 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!

Autumn Retreat at YMCA of the Pines

ymca of the pines

When choosing a location for the Autumn Retreat, there were many things to consider. After meeting with staff members and touring the grounds, we knew YMCA of the Pines would be perfect for you! Keep reading to find out why!

YMCA of the Pines (formerly Camp Ockanickon) has been a staple in the community for more than 100 years! It’s centrally located on 800 acres among the beautiful Pinelands of New Jersey, just outside New York City and Philadelphia. The camp boasts professionally-trained staff members and high-quality programming. They make sure every experience is safe and enjoyable!

We love that the camp encourages participants to leave their comfort zone, increasing self-confidence and self-esteem. Our goal is to provide all attendees with an educational and enriching experience. YMCA of the Pines is prepared to make that happen! With countless camp sessions and retreat groups a year, staff members are experienced in offering an ideal experience for each group.

YMCA of the Pines is accredited by the American Camp Association, which works with the American Academy of Pediatrics, the American Red Cross, and other organizations to ensure that participating camps meet up to 300 standards!

Camp Accommodations

Participants of the Autumn Retreat can choose to stay in a lodge or cabin for the weekend. As the central meeting place, the lodge is recommended for those looking to connect with others. The lodge features the modern amenities you’re used to, like air conditioning, heating, and comfortable furniture.

For a more traditional camp experience, participants can stay in an open-air cabin. Cabins sleep up to 8 and share shower and bathroom facilities with neighboring cabins. Family cabins may be reserved. Learn more about accommodations here.

REGISTER HERE

5 Reasons to Attend the Autumn Retreat

turner syndrome autumn retreat scholarship

The Turner Syndrome Autumn Retreat is an empowering weekend designed just for you! Each TSF Retreat is carefully planned based on the feedback and needs of our community. Here are some of the top reasons to attend this special event!

1. Improved Health Outcomes

Studies show that attending health-specific camps can have a positive impact on the quality of life of campers. By normalizing a condition, these camps can increase social functioning, promote acceptance, and reduce stress in regard to treatments.

2. Build Relationships with Fellow Campers

The Retreat naturally allows for inclusion and connection, giving you the opportunity to not just meet others with TS but from true bonds. We know that this camp can lead to lasting friendships because we’ve seen it!turner syndrome autumn retreat

3. A Chance to Grow

Choose to participate in events throughout the weekend that you normally wouldn’t. Speak with others who have experienced your troubles and got through it. Learn from expert advice provided by professional presentations. Whatever it may be, use this weekend to realize your own unique capabilities and dream bigger!

4. Something for Everyone

The Autumn Retreat has something to offer for women and girls of all ages. In 2018, we hosted women and girls from 7 to 48 years old! Activities are strategically chosen to entertain and benefit all participants.

5. “I Am More than TS”

Many girls and women have come to us sharing that they are so much more than their diagnosis. We completely agree! While the Retreat will offer opportunities to learn about managing Turner Syndrome, it is about much more than that! This Retreat is a place for you to form friendships, connect, unwind, and have fun – allowing you to just be you!

Take advantage of this opportunity! Join us at the Autumn Retreat in 2019!

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!

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