Turner Syndrome is often thought of as a pediatric condition to the general public. But we all know it’s so much more than that! Turner Syndrome is a lifelong condition that requires specialized care at every stage of life.
The Autumn Retreat is designed with every age group in mind. We’ve included break out groups to give girls, women, and caregivers each a chance to spend time together, connect and talk openly. Wellness activities like yoga and nature education will allow you to reconnect with yourself, while activities like a dance lesson and lake hike will allow you to leave your comfort zone and create memories with others. The holistic approach to the weekend will give you a chance to refresh your mind, body and soul.
We encourage you to join us, get away for the weekend, and enjoy all of the relaxation and recreation Camp Ockanickon has to offer.
Turner Syndrome women and girls are at an increased risk for obesity. This is a problem because of the weight-related comorbidities that complicate TS care, including diabetes, elevated cholesterol, liver dysfunction, hypertension, and other cardiovascular complications. The risk of developing type II diabetes is ten-fold in the Turner Syndrome population compared to the general public. The 2017 Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome states weight management is the most important health intervention at annual visits, and nutrition counseling and physical activity should begin in early childhood. By maintaining a healthy weight, the risk of developing type II diabetes can be substantially reduced.
An article published in Frontiers in Endocrinology, “The Natural History of Metabolic Comorbidities in Turner Syndrome from Childhood to Early Adulthood: Comparison between 45,X Monosomy and Other Karyotypes,” studied how obesity affects metabolic disorders in children and young adults with Turner Syndrome, specifically in those with 45,X monosomy. Some of the metabolic risk factors starting in childhood include hypertension, impaired glucose metabolism, and hyperlipidemia. Whether these metabolic disorders are inherent to Turner Syndrome is unclear; however, it is clear that obesity impairs the metabolic profile of Turner Syndrome girls. Like the Clinical Practice Guidelines, this article stresses the importance of early detection, routine assessments, and timely interventions of weight and metabolic function. Click below to read the full article and learn more.
Order 2017 Clinical Care Guidelines https://turnersyndromefoundation.org/product/2017-guidelines-summary-patient-caregiver/
There are just TWO WEEKS left to register for the Autumn Retreat and save $25 per person! If you’re unsure if this opportunity is right for you, read one family’s experience after attending a similar event!
Pediatrician and mother:
“Just a note to let you know how pleased I am for my daughter. She seemed to have come back a changed person, with more self-confidence, independence, and self-esteem. She also has bought into the treatment: no longer do we fight over the shots and she was very eager to start estrogen treatment. She gained tremendous insight into Turner syndrome a deeper awareness of her own potential. She is also taking more pride in her physical appearance. Expressing feelings seems to come easier for her. I feel there were many doubts she had about herself related to Turner syndrome and she was waiting for an opportunity like this to open up and share her thoughts with others.”
Similarly, an endocrinologist with experience working with Turner Syndrome girls had this to say:
“Condition-specific camps can be a life-changing experience. It offers them the opportunity to meet other children with whom to share common experiences and form bonds that can be life-long.”
While the Retreat does take place in a camp setting, it is so much more than a traditional summer camp weekend. Here are some of the top benefits of attending a specialty event!
Turner Syndrome women and girls often tell us that they feel different in their day-to-day lives. Maybe you learn differently than your peers, or maybe you’re the shortest woman in your office. At the Retreat, you don’t need to worry about any of those things because everyone understands. Instead, spend a weekend being openly and freely you!
We can’t ignore that traditional social settings can often turn into a popularity contest. By removing this social competition, the Retreat naturally allows for inclusion and acceptance, encouraging personal growth and leadership development.
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!
Many girls and women have come to us after overcoming a struggle and realizing their potential, stating, “I am more than my condition,” and we couldn’t agree more! While the Retreat will offer opportunities to learn about managing Turner Syndrome, it is about much more than that! This Retreat is designed as a chance for you to form lifelong friendships and connections, unwind, and have fun!
Register by April 30 and save!
The New Jersey Marathon is a perfect opportunity to raise awareness of Turner Syndrome. Not only will you be making a difference, but it’s also the perfect chance to enjoy a sunny (hopefully) day filled with love and happiness with the Turner Syndrome community. Come and join the cause! Get your heart to pump a little faster by joining any of the races, enjoy our delicious food, treat yourself with some sweets, laugh at the occurrences of the lovely children, talk with other TS parents/caregivers and so much more. I mean… I wouldn’t think it twice! What are you waiting for?
Don’t believe me? Take Joan & George Devito’s words:
We have been attending the TSF Family Day at the NJ Marathon for the past six years! In 2011, our daughter, Cindy, read about the event after Googling Turner Syndrome. She immediately contacted Donna Villavicencio and was thrilled to meet another mom whose daughter had TS. We knew so little about TS at this point in time. That year,16 of us attended and we were so thrilled to meet Laura and her family; and, for the first time, be given valid and encouraging information about TS. We were excited to meet other TS families and to no longer feel so alone and that we were the “only” family going through this. Since then we have attended every year, although with a smaller group, but we would not miss this very special day!
Another highlight for us was in 2014 when we walked the half marathon for our granddaughter, Ava, and for all TS girls. It was an amazing experience, especially seeing our family at the finish line cheering us on!
We are looking forward to participating again this year. If anyone is on the fence about attending, we would strongly encourage you to do so. It is a fun-filled day for the kids and grownups as well and a wonderful opportunity to meet other TS families and form new friendships. It is also a great venue to raise awareness as so many people are not familiar with Turner Syndrome and it is important to share the knowledge that we have with other families that may be feeling like they are the “only” ones going through this. Please join us. We promise you will be glad you did!
Do you love baking? Take the blooming season as an inspiration to do what you love. Host a Bake Sale for Turner Syndrome. Not only will you be igniting your baking talents & passion, but you will also be making a significant difference in the lives of Turner Syndrome women. It’s a fun activity that can really go a long way! It’s the perfect opportunity to meet new people, enjoy a fun day, or even a chance to step you out of your comfort zone by doing something you haven’t done before. It’s a very simple activity and we have the tools to help you!
Take Jennifer’s Bake Sale as an example. Jennifer had never hosted an event in the past. Yet, with her unborn daughter as inspiration, and the support of family and friends, Jennifer decided she wanted to take action in the fight to bring awareness to Turner Syndrome by contacting the Turner Syndrome Foundation and hosting a very successful bake sale to raise money and awareness. Through her outreach, she received sponsorships to help offset the cost of the event and resulted in over 100 people attending. Isn’t this great? YOU CAN DO IT TOO!
It’s OKAY if you don’t know how/where to begin. Complete the inquiry form below and will help you get started! Questions? Contact email@example.com
Have an old car taking up space in your driveway? Or an old boat that hasn’t sailed in years? Clean out your garage and make room in your driveway with vehicle donations to Turner Syndrome Foundation! The vehicle will be towed for free at a time that is most convenient for you! And you receive a tax-deductible donation!
Accepted vehicles include:It’s so EASY to donate your vehicle! Call 855-TSF-4-CAR or fill out an online form here. That’s it!
Questions? Contact TSF
We are excited to announce that we are hosting a Turner Syndrome Autumn Retreat for you this September! We know how important it is to form lasting connections, especially with people who understand your story. This is the perfect opportunity to do just that!
This is the first event of its kind – a chance for women & girls with TS and family members to come together, have fun, learn, and unwind surrounded by nature. The retreat specializes in your needs, offering not just memories to last a lifetime, but skills and knowledge to help you manage your life with Turner Syndrome. The Retreat will provide a laid-back summer camp vibe, making sure everyone is comfortable to be themselves.
Are you affected by Turner Syndrome? Then this weekend is for you! Women & girls with TS, parents, and family members are invited and encouraged to join us!
One parent shared this about her daughter’s experience at a similar camp:
“Just a note to let you know how pleased I am about the week for my daughter. She seemed to have come back a changed person, with more self-confidence, independence, and self esteem. She also has bought into the treatment: no longer do we fight over the shots and she was very eager to start estrogen treatment. She gained tremendous insight into Turner syndrome a deeper awareness of her own potential. She is also taking more pride in her physical appearance. Expressing feelings seems to come easier for her. I feel there were many doubts she had about herself related to Turner syndrome and she was waiting for an opportunity like this to open up and share her thoughts with others.”
Register by April 30 and save $25 per person!
Spend a weekend in nature connecting, learning, exploring, and growing with people just like you! Turner Syndrome women, girls, and parents are invited to join Turner Syndrome Foundation for a weekend in picturesque Medford, NJ at YMCA Camp Ockanickon. Situated on Lake Stockwell surrounded by autumn’s changing leaves – this weekend is the perfect opportunity to just be yourself in a community of people who understand your story.
The TD Bank Affinity Program is designed to help support non-profit organizations at no cost to its members or supporters. TD Bank makes an annual contribution to Turner Syndrome Foundation based on the average balance in all members’ accounts. Checking, savings, money market, CD, and retirement accounts are all eligible. Learn more.
It’s simple! Visit your local TD Bank and ask that your accounts be linked to the Turner Syndrome Foundation through its Affinity Banking program. Please note, Turner Syndrome Foundation will not receive any information from TD Bank regarding your account balances or any other personal information. The TSF Affinity code is: A3538
Help TSF spread the word! Share the flyer below with friends, family, co-workers, and more and ask them to support a cause that is near to you – at no cost to them! You can also collect their basic contact information with this sign-up sheet and mail to our TD Bank representative, Maureen Dunn, at TD Bank, 16 Bethany Rd, Hazlet, NJ 07730.
Support TSF. Make a donation.
©2017 Turner Syndrome Foundation