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.
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
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 firstname.lastname@example.org
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.
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!
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:
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.”
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!
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!
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!
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.
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!
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 email@example.com for further assistance.
Dr. B. Michelle Schweiger, pediatric endocrinologist of Cedars-Sinai Medical Center and TSF Professional Member, will be speaking at the 2019 Pediatric Endocrinology Nursing Society (PENS) Conference on April 27, 2019 in Long Beach, CA.
Dr. Schweiger’s presentation, Specific Care Considerations for Patients with Turner Syndrome, will cover the most up-to-date information on Turner Syndrome care, including risks associated with reproductive health and diabetes, transitional care, and the importance of continued adult care. There will be time for audience participation following the presentation.
Dr. Schweiger co-directed the opening of The Turner Together
Clinic at Cleveland Clinic Children’s before relocating to Cedars-Sinai. She is
very familiar with Turner Syndrome and understands the importance of a
coordinated group of professionals working together to best treat Turner
All conference participants are encouraged to attend this talk to learn how to effectively transition patients from pediatric to adult care, a pivotal time in the Turner Syndrome health journey. Currently only 3% of adults are following the care plan outlined in the NIH Clinical Care Guidelines. However, these same guidelines note that careful medical follow-up in adults with TS may decrease mortality and morbidity and improve quality of life. Pediatric nurses stand at the forefront of ensuring that girls with TS and caregivers understand the importance of continued care throughout adulthood.
In addition to the presentation, participants are invited to visit TSF at the exhibition booth on Friday, April 26 to receive Turner Syndrome resources and learn about opportunities to get involved!
To learn more and register for the conference, please visit http://www.pens.org/conference/Pages/Program.aspx
Medical care providers are encouraged to join the TSF Professional Membership in order to be connected with opportunities such as this, please visit https://turnersyndromefoundation.org/professionals/professional-membership/
Michelle Schweiger, DO, MPH (Bahareh.firstname.lastname@example.org) is the Director of Pediatric Endocrinology and Co-Director of eXemplarY Kids Clinic at Cedars-Sinai. The eXemplarY Kids Clinic provides a comprehensive program for children with X & Y variations including Turner Syndrome. She is board certified in Pediatrics and Pediatric Endocrinology with the American Board of Pediatrics. Dr. Schweiger has spoken at more than 40 conferences and events on topics including pediatric diabetes, adrenal gland disorders and thyroid disorders. Her research has been published in the International Journal of Pediatric Endocrinology, International Journal of Pediatrics, Current Opinion in Pediatrics,Pediatric Blood & Cancer and Diabetes Care, among many others. She is a member of several professional societies, including the American Academy of Pediatrics, The Endocrine Society, and the Lawson Wilkins Pediatric Endocrine Society
Awareness Month is a unique opportunity to call on legislators, the media, industry leaders, and more to pay attention and take action! But, it doesn’t mean we stop our efforts when February ends. In order to bring about real change, we need to keep working together all year long!
At TSF, we celebrate February and everyday awareness because we know your need for community and support doesn’t end on March 1. In fact, it’s even more important to continue taking action after February because of the momentum that’s been building throughout Awareness Month! Below we’re sharing a list of ways you can continue getting involved!
2. Become a monthly donor. Monthly donors sustain this cause by spreading a donation throughout the year.
3. Host a fundraiser. A casual day at work, seasonal party, or proceeds benefit – there are so many events you can plan to raise awareness! Learn more here.
4. Share your awareness story. How did you take action this Awareness Month? Share your story to inspire others!
5. Speak to your doctor about hosting a workshop. Create a community of support and knowledge when you bring a patient education workshop to your area! Talk to your doctor about the possibility, then pass their contact information along to us so we can follow up!
6. Join the TSRX. A great way to raise awareness is by participating in research. Join the TSF research registry, TSRX, and be part of the solution! Already registered? Sign on to update your responses now!
7. Ask your employer to sponsor TSF. We rely on generous donations to continue our life-changing programs. Do you know a local company, maybe your employer, who like to give back to this community and gain recognition? Let us know!
8. Post on social media (again!). Keep the online conversation going by reminding your friends and family why this cause is important to you!
9. Contact local media outlets. Invite them to share an article, post, or newsletter about TS to raise awareness. You may even be featured in the article!
10. Join the Star Sisters. The Star Sisters is an online community of positivity so anyone, anywhere can participate! Join to connect with women from various walks of life and create a network of support!
Have an idea of your own? Let us know! We’re here to be your partner in awareness! Thank you for all you do!
Emily is both a mother and postpartum nurse. She helps other parents cope with a Turner Syndrome diagnosis while raising a miracle of her own. With this unique perspective, Emily understands the importance of raising Turner Syndrome awareness.
On April 5th of 2016, my husband and I welcomed a beautiful little girl, Ryleigh Laine, into our family. Oh, and what a precious addition she has been! She has brought so much joy and laughter to our lives!
Matt and I learned of Ryleigh’s probable TS diagnosis only 12 weeks into the pregnancy. At 16 weeks, an amniocentesis was performed to give us more definitive results. Naturally, we were fearful for our unborn child and what this diagnosis meant for her wellbeing. The amniocentesis indeed confirmed… our sweet baby girl had TS.
We were given the option to terminate the pregnancy but that was not even a question for us. This child for which we hoped and prayed, that we were told our odds of conceiving were slim, that we loved even before she existed…no, she would be given every chance to live and be loved beyond words.
The pregnancy moved along from one week to the next. We were monitored closely by our general OB, High risk OB, and neonatologist. We were at high risk for an intrauterine fetal demise/still birth, which was terrifying to say the least. But from day to day, and week to week, Ryleigh was thriving and presenting just as any other normal fetus! Countless appointments and ultrasounds later, we were ready to deliver!
After an uncomplicated labor, on April 5th at 8:55 am, we delivered a beautiful baby girl! She was perfect in our eyes. Hospital staff performed an EKG and echocardiogram shortly after her birth. A couple minor concerns presented but no major heart defects were seen. God is good. We were so very relieved. Two days after delivering we were headed home with baby.
Ryleigh was seen by a geneticist who ordered chromosomal karyotyping which gave us the final, definitive confirmation of Mosaic Turner Syndrome. Since then, Ryleigh has been seen regularly by her pediatrician along with a team of consulting physicians including a geneticist, pediatric cardiologist, gastroenterologist, ophthalmologist, and an endocrinologist. Numerous diagnostic tests and blood draws later (which, by the way, she endured exceptionally well with a smile), Ryleigh is doing great! Thus far the biggest area of concern is with her endocrine system. This affects her hormone levels, which in turn, affect her growth. Close surveillance of her growth velocity was of great importance. Ryleigh began Human Growth Hormone (HGH) injections at 20 months of age and is responding very well.
I am also a postpartum nurse and have the honor of sharing our story with new parents facing similar circumstances. I’m blessed to have the opportunity to spread TS awareness not only as a parent but as a clinician.
Ryleigh Laine Anthony; perfectly imperfect, just like us all, and just as God intended. We learned we were pregnant just days before my Mom passed. We were able to share the news with her and see her face light up with so much joy! I will never forget the smile on her face. We fully believe that her Grammy had a hand in her being here and watches over her every single day. The symbol for TS happens to be a butterfly and my mom simply adored butterflies. Grammy and God hand picked her just for us. For this we are eternally gracious.
Ryleigh will surely have challenges ahead but with the support of family and friends, she will do great things! Of this, I am certain.
Advocacy is the path to obtaining the support and services you need. As an advocacy organization, we understand that gaps exist in certain areas of Turner Syndrome care, legislation, and more. However, with your help, we can raise awareness to make Turner Syndrome a national priority.
All you have to do is complete a brief form and we’ll send it to the legislators representing your constituency. Sign today and make your voice heard. Signed in the past? Be sure to sign again in 2019 to reach newly sworn in legislators!
Awareness Month is an opportunity for our community to come together, to raise our voices, and make sure everyone affected by Turner Syndrome is receiving the care they deserve. By making more people aware of Turner Syndrome, there is hope to reduce diagnosis age, to educate doctors and teachers, to eliminate any stigma associated with Turner Syndrome, and so much more. Most people do not understand Turner Syndrome until they are personally affected, but together we can start a conversation and change the future of Turner Syndrome care. Your local legislators hold the power in your community to make that happen.
There are an estimated 80,000 women and girls living with Turner Syndrome in the U.S., 2 million worldwide. This number does not include parents, siblings, caregivers, and more who are also touched by this condition. Ultimately, there are more than 2 million reasons to sign the petition.
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