Workshop for Turner Syndrome Patients and Their Caregivers

On Saturday, April 22, Turner Syndrome Foundation and Jersey Shore University Medical Center are partnering to host a Turner Syndrome Foundation Workshop. The workshop is FREE and will be held at K. Hovnanian Children’s Hospital in Neptune, NJ. Turner Syndrome Foundation workshops have been organized since 2009, reaching out to patients in their communities. This workshop is designed to educate and support patients living with Turner Syndrome and their caregivers. The event is being organized by Pediatric Endocrinologist, Dr. Margarita Smotkin-Tangorra, D.O., of the Jersey Shore University Medical Center. I had the pleasure of speaking to Dr. Smotkin-Tangorra to discuss her experience with Turner Syndrome care, Jersey Shore University Medical Center, and what patients can expect from the workshop

Dr. Smotkin-Tangorra’s interest in Turner Syndrome first appeared in medical school, while doing third-year rotations at Winthrop University Hospital in Long Island, NY. She had read a lot about Turner Syndrome, but it was here that she finally met a Turner Syndrome patient. The patient was a thriving 16 year-old who had been diagnosed with Turner Syndrome at the age of 7. Dr. Smotkin-Tangorra was captivated by how this patient “was able to make her diagnosis completely her own and grow to become a flourishing young woman.” After this first meeting with Turner Syndrome, Dr. Smotkin-Tangorra trained in Brooklyn, NY at Maimonides Medical Center, where she saw a large number of Turner Syndrome patients. The introduction to Turner Syndrome early on in her career left Dr. Smotkin-Tangorra with a fascination about this rare condition. Dr. Smotkin-Tangorra continues to work with a large number of Turner Syndrome patients, ranging in age from young children to late teens, at Jersey Shore University Medical Center.

The Center is a member of the Meridian Health System, which has received many state and national recognitions. When asked what sets Jersey Shore University Medical Center apart in its capacity to care for Turner Syndrome, Dr. Smotkin-Tangorra noted that the Center’s multi-disciplinary team makes all the difference. The Center has all of the subspecialists necessary to care for Turner Syndrome right under its roof. As a result, a Turner Syndrome patient who goes to Jersey Shore University Medical Center does not just get one doctor, but a comprehensive team that can easily provide information to one another. With this team of professionals working together, “the care becomes very personal,” says Dr. Smotkin-Tangorra.

So what can patients and caregivers expect from the upcoming Turner Syndrome Foundation Workshop? Presentations led by professionals of Jersey Shore University Medical Center and dedicated activists will cover all aspects of Turner Syndrome care, including an update about diagnostics and treatments, the importance of nutrition and exercise, and more. An enriching childcare program will be provided for children and their siblings to allow adults and older patients a chance to fully participate in the workshop. The workshop is a great opportunity to meet other patients living with Turner Syndrome. Many girls and women leave workshops with new, lifelong friendships. Attendees will also get the chance connect with specialists from Jersey Shore University Medical Center who they can turn to for future questions and needs. For those who have attended the Turner Syndrome Foundation Workshop in the past, it’s important not to miss this event! Different professionals and new material will be featured this time around. The program will end with an open discussion, so come ready to ask questions! To register, visit www.TurnerSyndromeFoundation.o... or call Turner Syndrome Foundation at (800) 594-4585.

Event Information: Turner Syndrome Foundation Workshop

When: Saturday, April 22, 2015 8:30 AM- 1 PM

Where: The Specialty Care Center at K. Hovnanian Children’s Hospital

Jersey Shore University Medical Center/MeridianHealth System

61 Davis Ave., Neptune, NJ 07753

Ph: 732-776-4937

Cost: Attendance is free. Donations to TSF are gladly accepted.

Advanced registration is required.

Agenda *Tentative and subject to change

8:30 a.m. REGISTRATION & Continental Breakfast

WELCOME: Laura Fasciano, Turner Syndrome Foundation

9:00 a.m. Topic: TURNER SYNDROME UPDATE

Speaker: Margarita Smotkin-Tangorra, D.O., Pediatric Endocrinologist

10:00 a.m. Topic: HEALTHY EATING (for adults)

Speaker: Jane Reinertsen, Registered Dietician

10:00 a.m. Topic: COPING SKILLS (for kids)

Speaker: Jennifer Bozarth, LCSW, Licensed Clinical Social Worker

11:00 a.m. Topic: HEALTHY EATING (for kids)

Speaker: Jane Reinertsen, Registered Dietician

11:00 a.m. Topic: COPING SKILLS (for adults)

Speaker: Jennifer Bozarth, LCSW, Licensed Clinical Social Worker

12:00 p.m. Turner Syndrome Foundation shared resources, patient registry & activism

Speaker: Laura Fasciano, Turner Syndrome Foundation

Talk & open forum to share.

1:00 p.m. Farewell!